How to Be a Good Dementia Caregiver
It may have taken you months or even years to admit that your parent, partner, or someone else you love has dementia. And once you do, the difficult knowledge can change your life.
The future may look very different from what you had thought. Slowly, in ways big and small, your loved one will fade away. This can stir lots of big feelings, including anger and grief. Make your way through those emotions at your own pace until you get to acceptance.
That’s the first and most important step in the care process. Once they see that you’ve embraced the diagnosis, your loved one often will do the same. The new normal looks a lot less scary when you can tackle it together.
1. Be open to new ways of interacting and communicating
“It’s easy to look at a parent or loved one with dementia and see them as they’ve always been,” says Dr. Wright. “But it’s important to realize that, to some degree, he or she is a different person now. They may look the same, but their behaviors are going to be different and you can’t return them to normal just through sheer willpower.”
Instead, Dr. Wright recommends taking steps to adjust how you perceive, interact and communicate with your loved one.
Being open to seeing them as they are now can help you better engage with them in your day-to-day activities. It can also help you navigate how to effectively respond to the challenging situations that will assuredly arise, such as their asking the same question repeatedly, forgetting something important or doing something inappropriate.
“It’s critical for you to give your loved one plenty of grace,” recommends Dr. Wright. “If you find yourself getting annoyed or short-tempered, remind yourself that they’re not doing these things intentionally. Their actions and behaviors are the result of something they have no control over anymore.”
2. Create a routine
Caregivers can help someone feel more comfortable by establishing a constant daily routine. Doing this can help reinforce a sense of familiarity in the person who has Alzheimer’s.
Caregivers should try to avoid making significant changes to a routine, as this can be confusing for someone.
Sometimes, there are changes that are unavoidable, such as introducing a new care provider or switching care settings. Individuals with Alzheimer’s often require time to adjust to new people and places, so caregivers should try to implement changes gradually.
3. Don’t correct them
A patient and/or loved one with memory loss often shows progression in terms of their problems with language. The first sign is finding the right words for things, or word accuracy. The patient and/or loved one may be telling you something about a letter they received, but they can’t get the word “envelope” out, or they may point to a lamp and they can’t quite get the word “lamp” out. Language starts to become disfluent, and it’s difficult for the person to find the specific, right word that they want to express. Over time, their language becomes increasingly vague—it is more difficult for them to say something specific. For example, if you ask them what they do on a day-to-day basis, often they’ll say, “Oh, you know, I kind of do the same old thing. I kind of sit around a bit I do house things,” but they can’t offer specific details. This is because their store of language has become affected by the disease. In short, it is very difficult for them to express themselves in any great detail.
Another way to spot decline in language skills is substituting words. For example, they ask you to pass the salt when they meant to say sugar. Stop yourself from nitpicking them on accuracy: “You meant to say the sugar, so here’s the sugar.” Skip that whole conversation. You won’t teach someone how to talk, and, it can be construed as rude to ask that person to try a little harder, because they’re already functioning with half the brain cells. If they point at the sugar and ask for salt, just hand it over as if they said sugar. That’s the most respectful and kind.
People with dementia and/or Alzheimer’s may ask repetitive questions. Usually the question expresses a concern they have. Anyone with a concern that isn’t being addressed will become louder and more persistent. He/she may repeat the same question, because he/she cannot remember that he/she has just asked it, and their concern hasn’t gone away. It is the caregiver’s and/or family member’s responsibility to help soothe the worry. The goal is not to make the question go away—it is to make the worry go away for a little while, and then the question may come back. It’s perfectly okay to give the same answer again if it helps to calm the patient and/or loved one. Certain situations throughout the day will trigger repetitive questions—that’s to be expected.
4. Be a realistic caregiver.
Be realistic about what constitutes success during the progression of the disease. Success is helping to assure that the person you are caring for is as comfortable, happy and safe as possible. Most experienced dementia caregivers will tell you that the person they care for has good days and bad days. Try your best to foster the good days and even the good moments for the person with dementia, don’t try to force them. Also, be realistic about the course of the disease. Remember that most types of dementia, including Alzheimer’s, are irreversible and progressive. Dementia will tend to get worse over time and there is no known cure. (A prominent exception is dementia induced by medications, which can be reversed when medications are withdrawn.)
5. Focus on individualized care
Each person with Alzheimer’s disease will experience its symptoms and progression differently. Tailor these practical tips to your family member’s needs.
Patience and flexibility — along with self-care and the support of friends and family — can help you deal with the challenges and frustrations ahead.
6. Be proactive rather than reactive
Dementia is progressive, so you’ll want to regularly assess how much support your loved one needs.
“Caregivers need to recognize when a one-off issue is becoming a pattern and be quick to enact a solution,” says Dr. Wright. “When caregiving for someone with dementia, it’s critical to be proactive, not reactive.”
Determining when exactly it’s time to make these protective decisions is tough, though.
If you’re struggling to determine when your loved one needs more care or what more care even looks like, a home safety evaluation can help you assess:
Your loved one’s risk
Whether safety concerns exist
Whether gaps in care exist
The next steps to take
Managing your parent or loved one’s care comes with many legal, financial and medical matters to navigate, too. Getting a head start on these can go a long way.
“It’s always more challenging to handle a situation if you wait to enact the solution until after something happens,” says Dr. Wright. “Not only could this limit what options are available moving forward, but delaying decision-making could also pose a safety concern to your loved one. I recommend beginning to plan for these medical and financial decisions very early on — ideally as soon as your loved one gets the diagnosis.”
Making decisions for someone else is always going to be stressful, but researching your options and making decisions in advance can help limit the amount of stress you ultimately face. This is important since, as a caregiver, you’re likely to face a lot of it.
7. Help them keep their animal companion
There are many benefits to having a pet for older people. Cats, dogs, and other animals can provide continuing love and companionship for someone with Alzheimer’s. For those in the early stages, taking care of a pet can help them keep active.
If it becomes more difficult for the person to care for their pet, people can consider ways to keep them together. This may mean asking a neighbor or community member to take a dog for walks or ensure a cat receives its food on time.
Some organizations, such as Meals on Wheels America, may also be able to deliver pet food. Look for local charities that provide dog walking, cat sitting, and temporary fostering services for older adults with health conditions.
Caregivers of people with dementia may experience a vast range of emotions, both positive and negative when helping their loved one.
There are many ways to help someone manage the effects of dementia, including those in this article. Caregivers may require help from other family members or professional healthcare services as their loved one’s condition progresses.
Self-care is a vital but often overlooked aspect of caregiving. Caregivers can prevent adverse health effects from stress by building a strong support network, protecting their physical health, and practicing self-compassion.