Dementia caregivers are experts at making decisions, and they want to do everything in their power to make life easier for the loved one they care for. This is certainly admirable, but it can be a lot to think about and even lead to caregiver burnout. Memory care and other senior living resources can help to alleviate these pressures.
Without the right resources, acting as a caregiver for your loved one with dementia can feel like an uphill battle. But it doesn’t have to be this way. You aren’t alone, and you don’t have to do this alone. Support is available to you and your family—just take a look at the five options we’ve provided below.
1. Self-Care Strategies
Self-care is often the first thing many dementia caregivers sacrifice. One National Institutes of Health study found that caregivers were significantly more likely to miss personal doctor’s appointments and fail to tend to their own medical needs.
This helps to illustrate how time-consuming caregiving can be when not properly managed. Basic acts of self-care can feel like just one more thing to cross off of your to-do list, and some caregivers might think that they’re being selfish when they tend to their own needs.
The reality, though, is that you can’t adequately care for your loved one if you don’t care for yourself. Self-care is vital to your ability to continue meeting your loved one’s needs and avoid burnout. You can’t pour from an empty cup.
Spend some time developing a self-care plan that prioritizes your needs. Some options to consider include:
- Make time for healthcare, including preventive care. Remember that skipping a medical appointment now could compromise your ability to care for your loved one in the future.
- Find the right support system. If you feel you don’t have anyone to support you, consider joining an online or in-person support group. You can find one here.
- Carve out time for exercise. Exercise relieves stress and pain, and even a little exercise is incredibly helpful. One study found that just 11 minutes of exercise a day could help you live longer.
- Dedicate time to doing something you enjoy. Life shouldn’t feel like an endless slog, and when it does, it’s much harder to care for your loved one. Spend some time pursuing and practicing your passions.
- Don’t hold yourself to a standard you don’t apply to other people. If you’re not angry at your siblings for not helping, for example, don’t guilt yourself for not doing it all. Kindness matters, and you must extend it to yourself.
2. Dementia Management Tips
Before you became a dementia caregiver, you might have believed what a lot of people do: Dementia is primarily just memory loss or there are foolproof treatments for it.
Understanding the Disease
The truth is that dementia fundamentally changes your loved one’s brain. Because the brain controls everything the body and mind do, the symptoms of dementia are vast, unpredictable, and constantly changing. Your loved one’s brain functions differently than it once did. They perceive the world differently, have different tastes and interests, and may struggle more with their mental health.
Your loved one is still there, but their experience with the world has changed. Managing caregiving for someone with dementia is all about understanding these changes. The goal should be to work with your loved one’s brain rather than against it.
Consider taking the following additional steps to help your loved one navigate life with dementia:
- Seek out occupational therapy. Occupational therapy for you and your loved one with a dementia care expert can help you better manage daily challenges, such as grooming and eating. For those who lack access to occupational therapy, a vast wealth of online resources can fill in the gaps, such as Teepa Snow’s YouTube channel.
- Adapt, adapt, adapt. Modify your home and schedule based on your loved one’s needs. A shower grab bar and nonskid rugs, for example, can reduce the risk of falls.
- Don’t make meals a battle. Encouraging your loved one to eat a balanced diet may be challenging due to changes in perception and preferences. If diet and nutrition are a struggle, ask their doctor for a referral to a dietitian.
- When possible, go with your loved one’s flow. Don’t force or coerce your loved one to make decisions they don’t want to make. Dementia is a terminal illness. Forcing strategies designed to maximize long-term survival is just not worth it if they undermine happiness in the here and now.
- Step into your loved one’s world. Meet them where they are. If they think their long-dead sister is with them, don’t correct them. This only forces them to relive the trauma of the death. Your loved one is having a different experience with the world than you are, and that’s OK.
3. Geriatric Care Management
Dementia caregivers have to make dozens of decisions daily. Do you hospitalize your loved one for a urinary tract infection or keep them at home? Do you consult with a memory care community or consider hiring a home health aide? Should you go through with that painful medical test? Should you encourage them to take medication they don’t want to take? Is speech therapy worth it? How much is it all going to cost, and can you afford it?
Just thinking about these decisions—let alone making them—can be a lot for one person.
When you factor in that most caregivers don’t have dementia expertise and might receive contradictory advice about how to provide the best care, it’s easy to see why even a seemingly simple decision can be intimidating.
Reduce stress by working with a geriatric care manager. These are dementia experts who understand the most common dementia challenges, both for your loved one and you as their advocate. They have connections to dementia resources in your area—memory care communities, family therapists, neurologists, and more—and can help you assess which resources might be right for your family. Because many geriatric care managers are also social workers, they can adequately support your family when talking through decisions and help manage caregiving conflicts.
Find a geriatric care manager near you.
4. Respite Care
Telling someone to prioritize self-care is easy, but it’s much harder finding the time to fit it into an already exhausting schedule.
Respite care offers a chance for dementia caregivers to work, go to school, spend some time alone, and practice self-care. Some respite care organizations even offer one-time care so you can go on vacation or get a break. If you need longer-term help, adult day services can free up time in your day and space in your brain so that dementia caregiving is just one part of your life—not the whole story.
5. Memory Care Communities
Most people living with dementia need 24/7 care as the disease progresses. Even if your loved one isn’t there yet, planning for this eventual reality can relieve much of the stress of caregiving and provide a workable plan for the future.
If you’re already concerned with the needs of a person who can’t safely be alone, know that you and your loved one both deserve what residential memory care can offer.
The Truth About Memory Care Communities
Some families worry that choosing a dementia care community is a last resort, leading to caregiver guilt. The truth is that today’s memory care communities are nothing like the closed-off, hospital-like nursing homes of a bygone era. Instead, they offer a higher quality of life, more socialization opportunities, more safety, and more support than most adults would receive at home.
In the right community, your loved one will get:
- Expert 24/7 support and care
- Help with activities of daily living
- Near-constant opportunities for socialization
- Access to an inviting and safe home
- Plenty of opportunities for exercise
- Activities specifically designed for the unique needs and brains of people living with dementia
- An environment designed to be soothing, thereby reducing challenging behaviors such as anxiety, sundowning, and wandering
- Exceptional nutrition that actually tastes good
A memory care community offers you something, too: relief from the regular responsibilities of dementia caregiving, helping to restore a sense of balance to your life. You may even find it deepens your relationship with your loved one. Free from many of the challenges of caregiving, you can begin spending enjoyable time together as equals once again. These are the memories your family deserves to be making. You deserve it. Your loved one deserves it. With the right support, dementia doesn’t have to be exhausting, and a life of rich purpose and meaning is still possible.
Additional Memory Care Community Resources
Any stress or indecision dementia caregivers face is certainly justified because you have a lot of choices to make and things to think about. But it’s important not to sacrifice your entire well-being to act as a caregiver for someone else—even if you love them. You can properly care for your parent or loved one without pushing yourself beyond your limit. Burnout isn’t inevitable.
To help create a better life for both of you, download our Caregiver’s Guide to Alzheimer’s Disease and Dementia for additional advice on caring and advocating for your loved one.
This post was originally published in Feb. 2023 and updated in July 2024.
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