Eight Tips for Dementia Caregiving

Eight Tips for Dementia Caregiving

Hi caregivers! My goal in this video is to give you some general guidelines for caring for your loved one with dementia. These are based on my personal experience, caring for my mom as well as running my elder care business and serving clients in Chapel Hill, Durham and Raleigh, North Carolina. However, these can be applied in a majority of caregiving circumstances.

Let me start by saying: caregiving is never easy, and dementia has a ton of different varieties. There are well over a hundred different types of dementia that have been identified and, surprisingly, how dementia affects your loved one may not be the same as it is for someone else. There’s a famous saying in the dementia care community: “If you’ve seen one case of dementia, you’ve seen one case of dementia.”

Tip 1: Communicate Clearly and Simply

People with dementia may have difficulty understanding complex or abstract concepts. It’s important to share your ideas simply, using short sentences and avoiding jargon. A great way to think about this is to offer alternatives. For example, let’s say you’re making lunch for your father. Instead of saying, “What do you want for lunch?”— where you might already know that Dad likes tuna and ham — you can say, “Dad, would you like a tuna sandwich or would you like ham?”

It’s also important to break things down into components as much as possible. For example, maybe you’re picking up Dad and you need him to get dressed, get on his shoes and jacket, and then get in the car. The quick way of communicating this is: “Okay Dad, we’re going to get you dressed, get on your shoes and coat, and we’re going to get in the car as soon as we can.” Now, that’s a lot of information. Instead, break it down and say, “Come with me, let’s get dressed.” Then, of course, you’ll help him get dressed. Then you say, “Okay Dad, let’s get your shoes on,” and so on until you get Dad into the car.

Breaking it down into the component parts makes it simpler and easier to understand, and there’s less need for him to remember the individual components. You might say, and probably correctly, that if Dad needs your help every step of the way and you’re doing these things anyway, what difference does it make? That’s a good point, but it’s it boils down to respect. Everyone likes to know what’s going on; no one likes to feel confused. Breaking things down may not make your job any different, but it gives him the courtesy of knowing what’s going on and feeling like he still participates.

Tip 2: Be Patient and Understanding

Dementia can be a frustrating and confusing experience for both your loved one and you, the caregiver. As frustrating as it is for you, in most cases, it’s no picnic for your loved one either. If you find yourself getting annoyed and perhaps even losing your temper, take a step away. As much as possible, just try to put yourself into the other person’s shoes. Think what it would be like for you if you couldn’t dress yourself well, or if you couldn’t use the toilet by yourself and needed to depend on other people.

Tip 3: Provide a Safe and Supportive Environment

Make sure the person with dementia has an environment that is safe and supportive. This may mean making changes to your home, such as installing grab bars in the bathroom or removing tripping hazards. But it also means communicating to Mom and Dad that their needs are important.

Many of my clients have been financially successful and live in gorgeous homes—mansions with beautiful furniture, artwork, and rugs. It can be very challenging to make changes to these places that are so important to the people who live in them. But a lot of these things are just fall hazards. I had one client whose husband was a severe fall risk. My frank and honest advice was to take up the rugs, because every transition from the smooth oak floor to the thick Oriental carpets was an opportunity for him to fall and get caught up on his walker. It was very challenging for her to think about that because she was very proud of her beautiful home.

Another thing to keep in mind is that you honestly cannot have too many grab bars. For my loved ones, I place them at every point of transition—even if it’s a single step from a kitchen into a TV room. Every transition point is an opportunity for someone to fall. Screw holes can be puttied over and everything can be repainted. Installing these, even if it’s temporary, is a lot less work and a lot less traumatic than Dad having a broken hip.

Tip 4: Encourage Independence Within Their Limits

As much as possible, encourage your loved one with dementia to do things for themselves. This is going to help them maintain their sense of independence and dignity. If Dad can dress by himself, provide standby assistance as needed, letting him do the parts of the dressing process that he can handle. Maybe he can put his socks on by himself. Yeah, it probably would be faster if you did it, but as long as he can do it safely, let him do the job.

Giving him that independence is huge in helping him preserve his dignity. Even if it’s small stuff, it gives your loved one an opportunity to participate and feel like they have value. If you’re making dinner, maybe Mom can wash the vegetables or set the table. When my mom had dementia, there were a lot of things she could no longer do safely or well; however, she did a great job sweeping the floor. We’d ask her to sweep the floor and the outside patio, and frankly, she did a wonderful job. It made her happy, and it gave her a sense of accomplishment as well as a little bit of exercise.

Tip 5: Provide Emotional Support

Most of the time, the notion of emotional support is for the caregiver, but dementia can be lonely and isolating for the patient as well. Don’t forget about the person who has dementia. A common question I get asked is, “Does my loved one know they have dementia?” It is a fact that people can be aware that they are losing their cognitive capability and that they are in decline. I’ve had many clients who have accepted the fact that they were no longer their best selves. For some folks, this can be devastating. Your loved one may be acutely aware of it and incredibly distressed. Don’t think that you’re the only one suffering in this process.

Tip 6: Help with Activities of Daily Living (ADLs)

At some point, you’ll need to assist with activities of daily living, such as bathing, dressing, and eating. The key thing here is to be patient and offer your help in a way that is respectful and dignified. A big challenge for a dementia caregiver is knowing just how much you should do for your loved one and how much you should let them do for themselves. It’s a fine line which constantly changes due to the natural progression of the disease.

The main consideration here is safety. Let them do as much as they can safely, but when their well-being is compromised, step in and help. Always try to do it in a way that’s respectful. For example, if you’re going to remove Dad’s shirt, make eye contact and let him know what you’re going to do. If he doesn’t process information or hear well, you might need to make the action of removing a shirt and pausing briefly to make sure you have his understanding and approval.

Tip 7: Take Care of Yourself

This could be the most important thing you do. Like they say when you get on an airplane: “Make sure you put on your oxygen mask first.” Care for self is one of the most challenging lessons of dementia care. The care journey can be very long — years, sometimes more than a decade. You may feel like you should sacrifice things that are important to you, but committing yourself to helping your loved one is already an adjustment you have made for their well-being. It’s important to take care of yourself both physically and emotionally. Get enough sleep, eat well, and exercise regularly.

Tip 8: Find a Support Group

There are many support groups available for people who are caring for someone with dementia. They can provide you with information, support, and friendship. At times, we all need someone to listen in an understanding way, and sometimes we literally need a shoulder to cry on. Support groups are designed to help lighten the burdens that come from caregiving. A well-structured support group offers a non-judgmental place where you can say what’s on your mind.

As a practical matter, they can be great places to exchange tips and ideas with people who are wrestling with the same challenges. Does your loved one resist taking a bath? Do they frequently have toileting accidents? Sometimes other people have found successful ways to deal with these challenges, and their suggestions might work for you. Don’t be afraid to ask for help. Reach out to family, friends, and professionals.

You Are Not Alone

Keep in mind that you are not alone. There are millions of people with dementia and millions of caregivers. Sometimes just reminding yourself that many other people have similar challenges can be a helpful way to cope and get through the day.