Tips on caring for a loved one with dementia

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If you’ve recently found yourself in a position of caring for a loved one with dementia, you are not alone. There are over 11 million caregivers providing over 18 billion hours of unpaid care to those living with dementia, according to the Alzheimer’s Association.

Although there is a large presence of caregivers amongst the population, we are not born with innate knowledge about what to expect or how to care for those with dementia. However, with patience, acceptance and the right resources, we can learn.

If you are experiencing an immediate need for caregiver resources or help:

Call the Alzheimer’s Association’s 24/7 hotline at 800.272.3900.  

See the bottom of this article for more hotlines and supporting resources.

Behaviors to expect when your loved one has dementia

People with dementia often have difficulty expressing their needs and wants. Of those living with dementia, up to 90% are also likely to show challenging behaviors.

These challenging behaviors often present themselves in ways of anxiety, anger and sometimes aggression. Knowing why your loved one is showing these emotions may help you navigate them.

A icon of a human head with the brain illuminated.

Dementia impacts the parts of the brain that are responsible for communication – including expression, comprehension, reading and writing. If your loved one is experiencing any of these communication challenges, it will become difficult for them to express their wants and needs. They may have trouble holding conversations and communicating basic needs such as feeling hungry, needing to use the bathroom or experiencing pain.

A person with dementia continues to experience normal sensations such as anxiety, hunger and fatigue, but they are not always able to put words to those feelings and sensations. The frustration of being unable to communicate thoughts and feelings can lead to anxiety, anger and sometimes aggression.

Identifying dementia behaviors

To help you better understand your loved one’s behaviors, here are some common responses you may notice and what it could potentially mean for them.

What the caregiver may seeWhat a person with dementia may be trying to express
AgitationPhysical pain, discomfort or hunger/thirst
AngerUnder-stimulation or discomfort
Sadness and depressionLoneliness or that a task is too difficult
Anxiety and restlessnessNeed for purpose, activities or engagement
Sleep disturbances (sleeping too little, too much, inverted sleep cycle)Anxiety associated with changing roles and relationships or over-stimulation
Repetitive questioningFear or worry

Navigating dementia behaviors

Although identifying the behavior is helpful, navigating it is a bit more difficult. If your loved one is experiencing an episode of agitation or frustration, the Alzheimer’s Association suggests the following actions.

Suggested behaviors:

  • Back off and ask permission.
  • Use calm, positive statements.
  • Reassure your loved one that things are okay.
  • Use visual and verbal cues to prevent surprise. There is also a lot of benefit from gently laying a hand on your loved one’s shoulder or leg prior to talking to get their attention.
  • Offer guided choices between two options.
  • Reminisce on happy and pleasant events from the past.
  • Limit environmental stimulation.
  • Slow your actions and words down.

Suggested phrases:

  • “May I help you?” or “I apologize.”
  • “Everything is under control.”
  • “You are safe here.”
  • “I am about to (insert action) now.”
  • “Do you want me to stay or do you want me to go?”

How caregivers can help loved ones with dementia

Although a dementia diagnosis will define the set of symptoms your loved one is facing, it does not define their life. There are ways that caregivers can help their loved ones with dementia maintain a good quality of life.

Caring for a loved one with dementia can feel difficult, but with patience, acceptance and the right resources, caregivers can learn how, like the one pictured in this image, holding his loved ones hand as she smiles up at him.
Know your loved one’s medical conditions and learn how to manage them.

It is important to know what kind of dementia they have plus any other illnesses that could potentially be causing them pain or discomfort. Underlying and unaddressed pain can cause agitation and aggression. See your loved one’s physician for a comprehensive exam and to ask any outstanding questions about their conditions.

Try to figure out their behavior patterns and educate yourself.

Behavior patterns are unique to each person with dementia. Being familiar with your loved one’s pattern of behavior and helping maintain a consistent and predictable environment may help prevent challenging behaviors.

Find joy and laughter in your relationship.

Look for moments of joy and celebrate it just the same as you have in the past. Although circumstances may differ, you still have your loved one in your presence. Look at old pictures, watch a favorite old movie and laugh with them.

Find engaging activities for your loved one to do.

This gives them purpose and joy and can keep from boredom or lack of stimulation. Consider their lifelong hobbies and tap into long-standing interests. That might include flipping through photo albums, painting, knitting, bird watching or doing puzzles. Visit the National Institute on Aging for more ideas.

Stay aware of agitating environments and try to reduce noise.

Increase things that make your loved one feel calm and at ease and decrease stressors, loud noises and bright or glaring environments. Playing soft, familiar music in the background is an effective way to make the environment calmer.

Help them remember to eat and drink.

Individuals with dementia often forget to meet their basic needs such as eating, drinking and using the bathroom. Offer meals or snacks often, help them get to the bathroom and encourage them to nap if fatigued.

How to cope with your loved one’s dementia diagnosis

A loved one’s dementia diagnosis is challenging and may lead some feelings of grief, but there is no right or wrong way to face the emotions that come with it. To make your journey a bit easier, there are a few tips you can keep in mind as you are caring for a loved one with dementia.

Understand that the dynamics of your relationship with your loved one may shift some. But your connection is still meaningful.

Take care of yourself. Share the load with other family members, respite care or home health care teams. Make time for exercise, healthy eating and 7-8 hours of rest. Additionally, find ways to continue your daily routines like doing chores or going on family outings, for instance.

Take advantage of community resource services. Join an Alzheimer’s support group. Caregivers who get support and give themselves time to connect with other individuals experiencing the same challenges lessen the likelihood of burnout.

Get rid of guilt. Most importantly, recognize that you are doing the best you can. Your loved one needs you and you are there for them – that should make you feel proud.

Resources for those caring for a loved one with dementia

We know that caring for a loved one with dementia can be difficult. If you are in need of immediate assistance, there are many hotlines you can contact now and free resources you can take advantage of.

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