When you love someone with Alzheimer’s disease or another type of dementia, the dynamic of your relationship will gradually change. You’re likely to experience a range of emotions throughout your caregiving journey. Shock, grief, enjoyment of time spent together, sadness, fear, love, guilt, and frustration are all normal emotions.
It may not always be “sunny days and clear sailing.” However, these tips can help you navigate the way.
1. Know that you’re not alone in your caregiving journey.
Approximately 15 million people are unpaid caregivers for someone with Alzheimer’s disease or another form of dementia. Furthermore, millions of others have charted these waters before you. They have seen what works—and what doesn’t. What’s more, healthcare professionals, such as Homethrive Care Guides are here to help and support you with tips, information, and resources.
It’s important to let go of the feeling that you have to do it all yourself. Reach out for the care, love, and support of those around you. Allow them the honor of helping you and your loved one.
2. Take care of yourself first.
Get regular physical activity, refresh your spirit, and take care of your mental health. Furthermore, engage in social activities at least weekly—if not more often. Read 50 Self-Care Tips for the Caregiver for more ideas. Keep in mind that in-home aides and/or respite caregivers are necessities sometimes—not luxuries.
3. Learn as much as you can.
Access resources about your loved one’s condition. Talk to others who have been there. Consider joining a support group online or in-person. The National Institute of Aging, Alzheimer’s Association, Lewy Body Dementia Association, Alzheimers.net, HelpGuide and Homethrive all offer information and help for people with dementia and their loved ones.
4. Plan ahead.
Soon after a diagnosis is made, ensure that healthcare and financial power of attorney documents are in place. Discuss where loved ones will live when the disease becomes unmanageable. Be proactive about end-of-life decisions, and get affairs in order.
5. Maintain a routine.
A structured schedule can be a source of predictable comfort for people with dementia. It can reduce stress, agitation, and confusion. Familiar faces, activities, and food can reassure your loved one.
To aid with cooperation, provide your loved one with cues regarding the time of day. For example, HelpGuide recommends opening curtains to let sunlight through the windows in the morning. Or playing quiet music to indicate that it’s bedtime.
At the same time, a consistent schedule can be helpful for short-term memory loss. Routine behaviors can become ingrained in the long-term memory. They’re also helpful as the person’s ability to plan, initiate, and complete activities diminishes. Take advantage of the best time of the day—often morning—for doctor’s appointments or visitors.
Minimize the number of visitors at one time.
6. Include enjoyable activities in the schedule.
Think about activities your loved one enjoys. Does he savor a morning cup of coffee? Listening to music? Cooking together? Looking at old photo albums? Do activities you enjoy together. Be sure to include outdoor activities, if weather allows. Taking a walk, sitting outside, or taking a drive can be therapeutic. Be flexible in how your loved one engages in the activity.
7. Stimulate the senses.
Be sure to include sight, smell, hearing, touch, and movement in the activities you plan. Try activities with your loved one that improve memory.
8. Keep it simple.
Speak in short simple sentences, but never “speak down” to the person. Avoid overcommitting to activities, and limit distractions.
9. Distract or redirect.
If a person is acting inappropriately or having an emotional meltdown, try backing off. Walk away momentarily. Then come back and change the subject, or offer an alternative activity. Music, singing, dancing—even a drink of water may be enough to distract a person.
If your loved one wanders, becomes stressed, or hides objects, learn strategies to manage dementia behaviors.
10. Use humor.
A funny movie, being silly, or lightening the mood can be very healing for people with dementia. Humor therapy has been found to be as effective as antipsychotic medications in reducing agitation. Sarcasm, ridicule, and other forms of hostility are not appropriate forms of humor for someone with dementia.
As a caregiver, you will get angry and frustrated at times. Take at least three slow deep breaths. Inhale for a count of 15 seconds. Exhale for a count of 15 seconds. Repeat. You will feel more relaxed. If you don’t, it may be time to call in reinforcements to give yourself a break.
12. Be specific.
Call objects and people by their names—rather than he, she, it, they, that. For example, avoid saying “Can you give me that?” Instead say, “Please hand me the blue dish towel.” Remind your loved one who you are if he seems unsure. Call him by name.
Involve your loved one in daily tasks—especially early in dementia phases. He can help wash dishes, set the table, or fold laundry—or throw dirty clothes in the hamper.
14. Be patient and creative.
Keep tasks relatively simple. Also, don’t jump in right away if your loved one is slowly doing the activity or hesitates. Instead, ask if she would like help.
15. Take advantage of technology.
Connect with children, grandchildren, or great-grandchildren over videoconferencing. Learn about the best technology devices for seniors. Homethrive Care Guides can conduct an informal tech inventory for your situation. What’s more, supportive technology is included in the Unlimited plan.
16. Remove dangers.
Don’t allow access to knives, guns, car keys, or matches. Homethrive offers virtual home assessments as part of its services. Reassure your loved one that she is safe. Let her know that you will help and protect her.
If your loved one paces, give him room and a safe place to walk.
17. Speak slowly.
Slow down when you speak to your loved one. This allows her time to process what you said. Speak in a calm and relaxed tone.
18. Repeat or rephrase.
If your loved one doesn’t understand you, slowly repeat what you said. You may need to repeat yourself throughout the day—or hour. If the sentence seems too complex to be understood, choose a simpler way to say it.
Short-term memory is often impaired in dementia. However, long-term memory can remain intact—especially in the early stages of Alzheimer’s disease. Spend time sharing old memories with your loved one.
20. Don’t argue.
Don’t disagree with your loved one with dementia. Avoid correcting him. Don’t try to reason with him.
21. Focus on feelings.
Rather than focus on the accuracy of what a person says, pay attention to how he is feeling. Later in the course of the disease, it may be necessary to fib. For example, if a woman asks for her deceased husband, it may be more compassionate to say he’s not home rather than having her repeatedly relive the shock and grief of the “news” that he died.
22. Limit choices.
Lay out two outfits, and allow your loved one to choose. Rather than asking, “What would you like for dinner?” Ask, “Would you like baked chicken or pot roast for dinner?”
23. Avoid quizzing your loved one.
Don’t ask, “Do you remember who was here yesterday?”
24. Provide support for challenging activities.
Planning, problem solving, and judgment are impaired in Alzheimer’s disease. This means that your loved one will need support with managing medications, bills, finances, and other more complex tasks.
25. Be loving.
Use your loved one’s name. Meet his eyes and smile at him. Touch him gently on the arm or shoulder. Choose your words carefully. Never say, “I just told you that.” As the disease progresses, stroke her cheek or hold her hand.
If your loved one is in the room, never speak about him as if he weren’t present. Include him in the conversation.
Listen with your heart.
The path you’ve found yourself on is not an easy one, but it can be extremely rewarding. These 25 caregiving tips can help make the journey less bumpy. Most important, take care of yourself or you will be an empty vessel unable to give.