Caregivers are amazing, selfless people who do anything and everything they can to care for a loved one with Alzheimer’s disease or another form of dementia. But providing care for a loved one with dementia can be exceptionally draining for caregivers in terms of time, emotions, and effort. Caregivers need support, and studies have shown intensive support for caregivers greatly improves their quality of life, and even minimal support (just talking regularly about what they’re going through) can provide an important emotional boost. It even benefits the person with dementia being cared for—counselling and support for caregivers delays the move of their loved one into a nursing home by more than one year on average.
As a caregiver, it’s important to realize that you are not alone. Please note, if you are feeling anxious, overwhelmed, or depressed, talk to your doctor. There is help available.
There are more than 16 million Americans who work as caregivers to a loved one with dementia. On this page we’ll provide strategies and tips for coping with the stress of caregiving, but there are practical things you’ll want to take care of as you begin. Start early, when your loved one is in the first dementia stages and can think well enough to provide input. Take these steps to set yourself up for success:
Power of Attorney
This can be a hard conversation, but dementia takes a person’s ability to make decisions and someone must legally be put in charge. Power of attorney documents allow a person (either you or someone you trust) to make financial and healthcare decisions for your loved one. Drawing up a “durable” power of attorney with a legal professional will allow you to decide on financial matters but also puts you in charge of choosing doctors, treatment, and (if necessary) care facilities like assisted living with memory care.
Obviously, caregiving is so much more than simply moving in and helping. You need to read up on your loved one’s specific type of dementia (the most common is Alzheimer’s, but there are more than 100 other types) so you can anticipate symptoms and needs. There are skills and techniques that aren’t obvious but will make caregiving easier. By reading and studying about dementia and caregiving, you give yourself the knowledge you’ll need to be prepared every day for this difficult job.
Dementia Care Central has a wealth of articles with practical advice about specific aspects of caregiving, like getting exercise, bathing, managing aggression, making the home safe, and so much more. We also have caregiving videos that demonstrate step-by-step approaches to communication with someone with dementia, dressing, the hand-under-hand technique, and more.
Find Community Resources
Start by contacting your local Area Agency on Aging. Tell them you are becoming caregiver to a person with dementia and you need to know what services are available to help. There may be activities, therapies, and even experienced volunteers to come help you, and these services may be inexpensive or even free. Every stage of dementia brings new challenges, and you don’t want to be playing catch-up to figure out what to do. Know what services are available before you need them.
Reach Out for Help
The less alone you feel, the better your attitude about caregiving, and attitude makes a huge difference for both of you. If you have good friends or relatives who you trust, talk to them about what help they can provide. Maybe it’s regular meals, rides to appointments, or coming over to spend time with your loved one while you run errands or take a break. In these difficult times, friends and family often want to help but don’t know how. If you can be specific about needs, you might be surprised at how much help you’ll get. (See Involving Family and Friends below.)
Given all of the stress that a caregiver faces, it should be no surprise that a whole host of emotions build up. Generally, these feelings are directed towards the situation, or even the care recipient, and may include frustration, denial, grief, anger, embarrassment, guilt, worry, and many others. Many caregivers feel guilty when they get overwhelmed. Many feel they aren’t doing the job as well as they should. Remember, there is no “correct” way to provide care. After all, you likely know your loved one’s needs better than most individuals, so find the way that works best for both of you. Follows are some general tips for dealing with the negative emotions caregivers so often face.
Whether you are frustrated to the breaking point or brought to tears, allow yourself to express emotions. You do not have to lash out at anyone. Simply leave the room and scream into a pillow, or sit down and have a cry. Bottling up your negative emotions or denying them is never the answer. Sometimes expressing an emotion, such as grief, followed by making a list of things in your life for which you are grateful, can be helpful.
Talk Honestly About How You Feel
In addition to expressing emotions in private, it can be helpful to honestly discuss how you feel with someone else. Whether in a support group or a one-on-one conversation with a close friend, voicing your troubles to another person helps. Even if there are no definite solutions, simply sharing your thoughts and feelings means that less of the burden is yours alone. If other solutions are not helping, consider talking to a professional counselor.
Understand Your Expectations, Triggers, and Limits
Consider why and when your negative emotions arise. Try to answer these questions:
– Are your expectations for yourself, your loved one, and the care you are providing realistic?
– Are there certain situations that especially try your patience, or moments when you can no longer deal?
– Are you taking it personally when your loved one acts out in anger or refuses your help?
It may be impossible to avoid facing negative emotions, but you can change how you deal with and think about them. Remind yourself that your loved one’s behavior is not purposeful and you should not take it personal; it is the disease. Focus on the actions that you can take to make things better in the present moment. Recognize that worry over things you cannot control does not solve anything.
If your usual coping mechanisms and the tips found here are not enough, and you find yourself depressed or overwhelmed, consult your physician or a mental health professional. Sometimes medications, such as antidepressants and those used to decrease anxiety, may be recommended.
Create a Schedule
Setting a schedule for the day, the week, or the month can be helpful and an eye-opener. You can quickly reference all the various chores, events, and appointments that need to be accomplished for your loved one and yourself. You will also be able to more easily find openings when you can plan in advance to create time for yourself. Finally, you will be able to recognize what activities or chores another friend or family member may be able to assist with, and ask them in advance.
Make Personal Time Away From the Home
It is important that you make time away from the house if your loved one lives with you. Whether you go out to dinner with your spouse, take your grandchildren or children to a movie, or go for a solitary walk in the park, time away from your loved one can provide the breaths of fresh air you need to keep going.
If you do not have friends, family members, or neighbors that can provide care for your loved one while you are away, seriously consider using some form of respite care. Respite care is temporary care provided by someone other than yourself. It could be adult day care, where you drop your loved one off to pick up later, or someone who comes to your home so you can take a break. Respite care has been shown in studies to benefit the caregiver and the person with dementia both. For more, click here.
Make Personal Time at Home
If you live at home with your loved one, it is also important that you find personal private time away from him or her at home. If need be, find time before your loved one wakes or after they go to sleep to sit down and enjoy a book, pursue a craft, play a musical instrument, pray, meditate, watch TV or a movie, or write a blog or journal. Remember, your home should be a caring place for you as well.
Regular exercise is one of the most important ways to manage stress. Even 15 minutes a day, just 3 times per week can make a difference. Ideas for fitting exercise into a caregiver’s life include using a treadmill in the home or going for a quick walk when a nurse or respite worker comes to the home. Regular exercise is even shown to delay the progression of dementia symptoms, so if your loved one is able, consider taking a walk around the neighborhood together.
Find Meaningful Together Time
Finally, it is important to create moments during the day or week when you have meaningful and positive experiences with your loved one. These special events / activities need not be extraordinary. Choose an activity that you enjoyed together before the diagnosis, such as baking, going to the beach, or singing along to the radio. Remember these positive peaks when you are feeling burnt out. Listening to music is a fun activity that can be shared, and it has a proven therapeutic effect on people with dementia. For more, click here.
When a partner, parent, or another loved one is diagnosed with dementia, friends and family members may not understand what is happening to the person they knew, or how this might change their relationship. The need to constantly explain the “situation” to others in your family can be frustrating. However, by educating your friends and family as to what to expect from your loved one and what you both need in terms of care and support, you are better equipping them to participate in providing care.
When you need help and support as a caregiver, approach friends and family members with specific tasks or times in mind in which you need assistance. For instance, if you have a sibling who lives nearby and you know that your loved one needs to go to the doctor on Friday, ask if they could take your loved one to the appointment. This will allow you to run other errands or have a break from your caregiving duties. Also, if family members are visiting from far away, you might consider asking them to spend quality time for a day or two with your loved one so that you can get away.
Often all you need do is ask a friend, neighbor, or family member for assistance, and you will be surprised by how many people are willing to help. They may be wondering “How can I help someone who is the caregiver for a person with dementia,” but don’t know what to do. Just as you are supporting your loved one, allow yourself to be supported. Even if you don’t feel you have a network of friends and family that can help in caring for your loved one, there are a variety of respite and community care options available to aid you in your caregiving.
Special occasions can be awkward for individuals with dementia. Visitors, new smells and sights, and a lot of activity can make such events confusing and frustrating for them, leading to emotional outbursts. Additionally, visitors may be surprised and disappointed at what they perceive as the changes in their loved one and in traditions.
It is still possible to have gatherings, special events, and holiday gatherings, but there are things you can do beforehand to ensure that they run as smoothly as possible:
– Prepare visitors beforehand for what to expect from your loved one.
– Consider smaller, more intimate, simplified gatherings.
– Keep familiar traditions or settings.
– Allow your loved one to contribute to the event, within their abilities.