Nearly 16 million family members care for a loved one who is living with Alzheimer’s or another type of dementia. Providing care to someone you love can be deeply rewarding, meaningful and intimate work. It’s also extraordinarily challenging, requiring you to draw on immense patience and emotional reserves. Caregiving can trigger old resentments, stir up family conflict and leave caregivers feeling isolated.
You might grieve for the parent you had (or the parent you never had and now never will), worry about the future or struggle with guilt. You may feel you can never do enough. Conservative estimates suggest that caregiver depression is twice the rate of depression in the general population. The chronic stress created by the demands of caregiving can also increase your risk of chronic illnesses such as heart disease and diabetes.
Your well-being matters, too. You deserve pleasure, time to yourself and a chance to pursue your own dreams. These needs are not selfish — they’re vital to your ability to be a good caregiver.
Dementia can change your parent’s brain as they get older, and it also changes your relationship. Caring for a loved one that’s living with dementia requires you to get to know this new person and build a new relationship.
It begins with learning all you can about the disease, how your parents are responding to it and how you can partner together to make it all feel more manageable. Learn how to cope with a parent living with dementia with the following expert tips.
Learning how to deal with an aging parent with memory issues begins with mastering some dementia management skills. Remember that dementia is more than just memory loss. It fundamentally changes an individual’s brain, altering their ability to understand and relate to the world. It can also make them anxious and unsure.
Your parent is not a child, and they’re not a badly behaved adult. They’re struggling with a brain disease. Managing this begins with educating yourself about their specific type of dementia. Visit online support groups and talk to your parent’s doctor, if possible.
Educate yourself about dementia management. Showering, eating and other activities of daily living do not have to be chronic sources of stress if you know how to approach them. Occupational therapist Teepa Snow offers a wide range of free videos on dementia management.
One key to keeping the days as calm as possible is to maintain a routine. Routines help people living with dementia feel less anxious.
“[During a visit] it is best to prioritize the schedule of your loved one,” Angela Champlin, HumanGood’s director of memory support services, said. “Talk to the memory support leaders to understand the routine of your loved one.”
“Often, less is more,” Champlin said. People living with dementia may feel overwhelmed by lots of visitors or activities. Instead, keep visits low-key and calm. If lots of people want to visit, this is wonderful for your loved one and allows them more social opportunities. But stagger visitors to prevent sensory overwhelm.
Champlin also recommends visiting early in the day, when people living with dementia feel their best. Pay attention to your loved one’s cues and routines. If your loved one seems panicky or overwhelmed, it may be a sign that the visit is just too much.
Continuously offer love. People living with dementia need to feel treasured, not alone. When your parent is struggling, try saying something like, “I love you, Dad. This is hard for both of us, but we are going to figure it out together.”
Every time you see a loved one who is living with dementia, remind them who you are without judgment or shame. “Hey Mom, it’s John, your son. I love you so much.” Then, let them decide whether they want to accept that identity or not. Don’t argue with them or continue correcting them if they aren’t accepting of it, and if they continue to be confused or assign a different identity to you, roll with it. Sometimes it is best to just “be a friend” during those times. Remember that stepping into your loved one’s world can help ease their anxiety.
Practice therapeutic fabrication. Rather than correcting a loved one’s understanding of the world, step into their world. If Mom thinks you’re her beloved brother, reminisce about family life and watch her light up. If Dad thinks you’re his wife and all he wants to do is enjoy a dance together, then give him this small gift. There’s no need to continuously remind a loved one of bad news, such as the death of a spouse, or demand they live in your world.
Champlin advises keeping goodbyes short. It can also be helpful to establish a goodbye routine.
Do something fun and meaningful that doesn’t require an intact memory. Try to draw on a loved one’s previous hobbies. If they love to garden, then grow an herb garden or go on a walk together. Music can be especially beneficial to people living with dementia, stirring up old memories and offering emotional support, so turn on an artist you know they always loved.
Include your loved one in the family. Show them pictures of family members and update them on the people they love. Welcome them to family events and ensure someone is present to support them. But be mindful that loud or high-energy events can be stressful, so your parent might need to leave early.
Don’t try to control a person that’s living with dementia. There is no treatment that can cure dementia, so imposing a restrictive diet or fighting about medication may not be worth the effort. Instead, focus on enjoying the present moment together.
Remember that your loved one has a brain disease. Dementia behaviors and memory issues are not a choice.
Dementia does not remove your parent’s desire for autonomy or their unique personal values. Early in the disease, they can still make decisions about their future. They may have important desires for their care. For example, maybe they want to ensure they go to regular religious services or feel most afraid of being away from family. Perhaps maintaining their physical appearance is very important to them, or maybe they worry they won’t get to enjoy their garden.
After the diagnosis, talk to your parents about their goals, concerns and hopes. This should be an ongoing discussion rather than a single conversation.
Some questions to ask include:
What will offer you the most comfort as your memory fades?
If the family can no longer care for you, what do you envision for your care?
What are you most worried about?
What is most important to you at the end of your life?
Do you have any spiritual or religious values that are especially important to honor?
Are there hobbies or interests that you want to ensure continue to be a part of your life?
Discussing dementia and the end of life can be painful, but the guidance of your parent’s goals and values can be invaluable when their memory fades and you have to begin making decisions. These prior discussions will assure you that you’re doing what Mom or Dad wanted.
To protect their assets and ensure you can fully care for them — including by making financial decisions when doing so becomes necessary — meet together with a lawyer who can discuss the right documents to draw up. Find an elder lawyer here.
An eldercare coordinator can also be an invaluable asset for understanding care options in your area and identifying the ways your parent’s needs might shift with time. Find an eldercare coordinator here.
You have a life, too. Your parent might not be the only one who needs your support — you may have young children or a spouse. Even if you don’t, your life matters, and your dreams for the future are important.
Long after your parent is gone, you’ll have to live your own life. You cannot be and do everything for your parent who is living with dementia. No one can. Prioritizing your own time and well-being will allow you to be a better caregiver.
Some strategies that may help you include:
Schedule time for yourself every day, even if it’s just 15 minutes to read or exercise. You deserve and need that time.
Adult day care can give you a break from caregiving during the day while providing your parent with a safe environment.
Asking for support from family and friends can help you tend to a loved one’s practical needs, offer you a break and potentially create closer family relationships.
Tend to your physical health with nourishing meals, plenty of sleep and regular exercise so you can keep going.
Seek emotional support from a therapist or caregiver support group.
Life Plan Communities that provide memory support offer peace of mind to you and a safe space for your parent. They’ll enjoy events tailored to people living with dementia, meaningful relationships, support, exceptional food and more. All of these benefits can relieve caregiver guilt while restoring a sense of balance to your relationship and your life.
If you're struggling to juggle multiple caregiving roles, you’re not alone. Learn more about caring for kids and parents at the same time in our guide, “How the Sandwich Generation Can Reduce Caregiver Burnout.”