Guide to Caregiving for a Loved One With Dementia

Taking on the role of caregiver for a spouse, parent or other loved one with dementia can be overwhelming and at times, heartbreaking. But if you’ve assumed this responsibility, you’re far from alone. According to the Centers for Disease Control and Prevention (CDC), more than 16 million Americans provide unpaid care to a loved one with Alzheimer’s disease or another type of dementia each year.

As you face your loved one’s dementia symptoms from day to day, you may at times feel stressed beyond belief. Knowing what to expect and what you can do to help — while getting the emotional support you need — can greatly improve the quality of care you give your loved one and help preserve your health and mental well-being.

We’ve put together this guide to help you manage the many facets of dementia caregiving, including care planning, how to manage challenging behavioral changes, tips for better communicating with your loved one, and dementia-friendly activities.

Learning that a loved one has dementia can be overwhelming, but creating a care plan can give you and your family a way to regain some control, anticipate what’s to come, and plan on how to deal with the changes to come.

As you start to develop your loved one’s care plan with their doctor, there are a few steps you can follow for the clearest path to success.

• Step 1: Make sure you understand your loved one’s type of dementia. Not all have the same symptoms or progression, so it’s crucial to understand what you are planning for.
• Step 2: Connect with the Alzheimer’s Association. Even if your loved one has a different type of dementia, the Association has many valuable resources.
• Step 3: Start the care plan early. This gives your loved one the best chance of being able to be actively involved in their care plan. Make sure you ask your loved one what they want for their care.
• Step 4: Identify your current concerns with your loved one’s condition, such as their communication, sleep, or safety, and shape the care plan around those issues.
• Step 5: Learn about your loved one’s financial standing and ability to pay for care, and look for financial assistance options like long-term care insurance, Medicaid waivers, or state and local programs.
• Step 6: Decide where your loved one should live. This may mean staying at home with a home health aide, moving to a loved one’s home, or moving to a memory care community.
• Step 7: Identify the “trigger events” that would initiate a need to change the care plan or where the person with dementia lives, such as increased wandering that makes living at home unsafe. Have a plan for the next steps to take when these trigger events occur.
• Step 8: Work with an elder law attorney to create an estate plan and power of attorney document if you don’t already have them. If you already have them, make sure everything is up to date.
• Step 9: Take time for self-care. Identify your sources of support, whether it be a therapist, social worker, support group, family and friends, or anyone else who makes your caregiving role feel more manageable.
• Step 10: Stay flexible. It’s a good idea to revisit the plan at least once a quarter to ensure it still meets your loved one’s needs.

The onset of dementia will come with a range of behavioral changes. Below, we explore some of the most common and what you can do to manage them.

Sundowning, also referred to as sundown syndrome or sundowner’s syndrome, describes to the state of agitation, confusion, and restlessness that people living with dementia can experience in the late afternoon or early evening. According to the Cleveland Clinic, about 20% of people living with Alzheimer’s experience sundowning at some point.

Maintaining good hygiene practices can be challenging for people living with dementia. Often, these tasks involve multiple steps, such as taking a shower, and the person may not remember which order all of the steps go in. Or, they may forget to complete hygiene tasks on a daily basis.

If your loved one with dementia is refusing or forgetting to bathe, brush their teeth, or change their clothes, here are some things you can do to help:

• See if a substitute caregiver works better for assisting with intimate activities like bathing. Many seniors may feel uncomfortable having a son or daughter help with anything involving undressing.
• Make the bathroom a positive environment for your loved one with products from their favorite brands and in their favorite scents.
• Stick to a consistent routine, and when you find something that works, make sure everyone involved in your loved one’s care knows what to do.
• Use positive language when talking to your loved one. For example, instead of saying, “You haven’t showered in days and smell bad,” say something like, “A hot shower feels so good after a long day, doesn’t it?”

Physical aggression — hitting, biting, scratching, spitting, and otherwise lashing out — is not uncommon in someone in the later stages of a dementia illness such as Alzheimer’s disease.

There are two main reasons why people with dementia may turn violent:

• Personality changes brought on by the disease include loss of inhibition and self-control. A mild-mannered individual may do things he or she would never have done previously.
• Emotional discomfort is the top trigger for physical aggression. The person feels insecure, threatened, angry, tired, embarrassed, humiliated, or otherwise vulnerable but lacks the ability to communicate these emotions in a socially acceptable way.

Some ways you can prevent aggression in your loved one with dementia include:

• Stick to routines for sleep and meals. People with dementia respond well to predictability.
• Keep a log of what happens during aggressive outbursts so you can identify and avoid triggers, and share the information with anyone else involved in your loved one’s care.
• Stay calm. Your loved one may be able to sense your frustration or aggravation, making things worse.

Learn more about how to handle aggression from a person with dementia.

People with dementia sometimes experience delusions and/or hallucinations. Some people understand that their minds are playing tricks on them, even in the midst of experiencing a delusion or hallucination. Others are completely absorbed in the experience and believe that it is really occurring. Whatever the case, understand that these experiences can be quite vivid and upsetting.

Some things you can try to help your loved one if they’re experiencing hallucinations and delusions include:

• Redirect their attention by asking questions, moving to another room, or walking outside.
• Offer comfort and make sure your loved one knows you are trying to help.
• Acknowledge what your loved one is feeling. Don’t argue with them or try to convince them they’re wrong.

Learn more about how to help a person with dementia who’s having hallucinations or delusions.

If you have a loved one with dementia, then you know how difficult it can be to communicate with them. While your communication with your loved one will never be the same as it was prior to their dementia, there are ways that you can make it easier. The following are techniques that can be used to improve communication with the person you love.

People with dementia sometimes display behaviors that seem out of character or are far too emotional for a specific situation. Sometimes, their behaviors are due to delusion or hallucination. Redirection techniques divert those individuals’ attention away from the stressful event to something that is more pleasant.

A few pointers on redirection techniques:

• Be warm and open when redirecting to reduce stress levels and/or tension. People with dementia pick up on body language.
• Ask pointed questions. Try to get to the bottom of any unexplained behavior by finding the emotion behind the behavior. It will make it easier to redirect if you understand the context.

Validation therapy is based on the idea that a person with dementia may be sorting through past issues (albeit somewhat disguised) in the present and that we should allow a person living wit dementia to believe what they want, as that is the truth in their mind. Validation therapy often integrates redirection techniques, but it is not solely about moving an individual’s attention from one thing to another; it’s also about validating feelings and emotions.

Some ways to use validation techniques when talking to your loved one with dementia include:

• Don’t get caught up in whether or not something makes sense. A person with dementia may not be able to piece everything together or fully understand what’s happening around them, but their emotions are still valid. In fact, their distress or anxiety can be amplified when they aren’t being understood. Accept that your loved one’s emotions have more validity than the logic that leads to them.
• Try to understand why your loved one behaves a certain way, and find ways to address their triggers. So, for example, if your loved one is hoarding or hiding items, ask what he or she is fearful of losing. Give a “safe box” that can be used to store those items.
• Ask questions about how certain actions or situations make your loved one feel. After you receive an explanation of those feelings, validate them with phrases that show your support, such as, “I’d be upset too, if that happened to me” or “I understand why you feel that way.”

Reawakening a person to the fact that they have dementia used to be the social norm, even for caregivers. It was even considered a “reality orientation” or “correction.” However, it’s now recommended not to do so. These small reminders shatter that person’s reality and can lead to aggressive behaviors. Dementia affects the brain, but the person still has a mind, an ego, and feelings that should be respected.

Participating in appropriate experiences can help people with dementia feel a sense of purpose and fulfillment, and can positively impact behavior. But, it’s important to take your loved one’s abilities, preferences, and mood into account before starting an activity– not all activities are suitable for people living with dementia.

The below downloadable list has ideas for activities you can do with your loved one with dementia.

Download PDF

If you’re working on getting your loved one more engaged with recreational activities, the below tips can help.

• 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. It will frustrate and turn them off if it requires remembering sequences or is otherwise above the person’s cognitive level.
• Be flexible with the outcome of the activity: Don’t be a stickler for things being done the “right” way or according to rules. The main consideration 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 store 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– 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 musical ability tends to be very well retained.
• 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.

Caregivers often feel the need to push their limits for the sake of their loved ones. But, if you end up getting burnt out, it’s not good for you or them. Moreover, it can be hard to recognize the signs of caregiver burnout because you’re likely accustomed to feeling stressed from your caregiving duties.

If you’re caring for a loved one with dementia, be aware of these signs of caregiver burnout:

• Increased irritability, or a much “shorter fuse” than you usually have
• More frequent emotional outbursts
• Insomnia
• Unintended weight loss or gain
• Frequent body pain for which you can’t identify the source
• Socially isolating from friends and loved ones, including not texting or calling them back

If you’re currently dealing with caregiver burnout, there’s zero shame in asking for help. You can find mental health care providers in your area using Psychology Today’s search tool or ask your physician for referrals to specialists. Use social media or the Alzheimer’s Association website to find in-person and online support groups where you can connect with peers going through similar things.

It can also be helpful to relieve some of your burden by getting outside help with your caregiving duties. An in-home care aide can help your loved one at home, while adult day care is a good option for socialization and getting out of the house.