Practical tips to help care for a loved one with dementia.
As a physician, Sally Willard Burbank, MD, regularly works with patients and families who are affected by dementia and Alzheimer’s disease (AD). She also has a personal perspective. Her father, who has passed, had AD, and she currently cares for her 97-year-old mother with the disease. She joined with a friend, Sue Pace Bell, who cared for a mother and a husband with AD, to share their lessons learned in The Alzheimer’s Disease Caregiver’s Handbook: What to Remember When They Forget. Dr. Burbank shared some of her top recommendations with Bottom Line Health.
It’s important to obtain power of attorney as soon as possible so you can make financial and legal decisions for your loved one. (See article on page 16 for a deeper look at legal issues to consider.) This can be difficult for your loved one to accept, particularly if they do not understand that they can no longer manage their affairs. It’s helpful to find a way to give them some power. For example, even if you are paying the major bills, you can make sure your loved one has cash when you leave the house so they can pay for their own purchases.
Assess what support is available from family and friends. Not everyone can chip in equally, but every little bit helps. One person may serve as a primary caregiver, while others may help with chores, cooking, or providing respite care. Promote clear communication and avoid conflicts by involving everyone in care planning.
If you are the primary caregiver, remember that this is a marathon, not a sprint. You can’t do it all alone. Use simple and direct requests for help rather than vague pleas. Don’t say, “I am so overwhelmed,” but rather, “Can you come over for two hours on Sunday so I can grocery shop?”
Don’t tell your loved one that the visitor is there to watch over them. It can feel demeaning, and many people will insist they do not need a “babysitter.” Instead, present the helper as a visitor. For example, when Dr. Burbank’s father had AD, her mother would schedule a parishioner visit from the minister so she could run to doctor’s appointments or get her hair cut.
When someone visits, ask them to remind your loved one of who they are and how they know each other.
Hire professional help to get a break. It doesn’t have to be an expensive nurse. You can hire someone just to watch over your loved one while you run a few errands. Educate any helpers on effective strategies for dealing with patients with cognitive decline, possibly by providing summaries of key strategies.
Make time to do something for yourself. If your loved one regularly naps, use that time to do something enjoyable, like reading a book or taking a long bath. Protect that time—don’t use it for chores or doctor’s appointments: It’s for your mental health.
Get out of the house
Dr. Burbank shares that some of her patients don’t take their loved ones out to public places because they are embarrassed by their behavior. Dementia isn’t something to be ashamed of, she says. It’s a medical condition. Consider having business cards made up that say something like, “He has Alzheimer’s disease. Please be patient.”
If your loved one gets anxious about going somewhere, don’t ask them ahead of time. That will only give them time to resist and worry. Instead, suggest going for a ride and spontaneously stop at the place you were planning on visiting.
If incontinence is an issue, put two adult diapers on at once underneath loose, elastic-waisted pants. This will make it easier to remove a soiled diaper from underneath a clean one.
Even when memory starts to fade, people can still read. If you’re going outside to garden or up to take a shower, instead of just telling your loved one where you are going—which they may forget—write it on a white board or a large note taped in a place the person will see it.
It can be frustrating when a person with AD asks the same questions or makes factual errors repeatedly, but it’s important to find ways to manage your feelings. If you become frustrated or upset, your loved one will often mirror those emotions. Try to remain calm and remember that they can’t help what is happening, and they’re not trying to frustrate you.Repetition often signals that the person is anxious or upset about something. See if you can uncover the underlying issue.
Avoid correcting the person unnecessarily and focus on positive interactions. Dr. Burbank had a patient who was always correcting her mother—including reminding her mother of a son who had passed away. You don’t have to be the honesty police. Instead, that patient could have talked to her mother about favorite memories of her son, which would have made her happy.
If your loved one insists on wanting to go home, it’s not effective to say, “This is your home.” Instead, try distraction. You could say, “OK, I’ll take you home, but before you go, we better do a quick load of wash so we can get clean clothes.” Start the washer and suggest having a cup of tea while you wait. Often, the person will forget that they wanted to leave.
Many people feel incredibly guilty when their loved one who lives in a facility asks to go home, but it’s important to remember that you don’t know what home they are referring to. You may think they want to go to your home, but they could be thinking of a childhood home.
Distraction is also helpful when someone starts asking the same thing repetitively. To help get their mind off the topic, ask them about a childhood memory or start to sing a song from their childhood. A large body of research shows that music—listening, singing, and creating it—can help people with dementia feel calmer and happier and can improve communication.
Maintain the person’s involvement in simple household tasks to provide a sense of purpose and involvement. People with early dementia may feel like a burden on their families or experience depression from boredom. Having activities can provide a soothing feeling of productivity. If you’re cooking, have them peel potatoes. If you’re gardening, they can help weed. Folding laundry or organizing a drawer are good options as well. Some people enjoy making collages, painting, or making a scrapbook with old photos, ticket stubs or theater programs. Try to find ways to help your loved one continue hobbies or a job they previously enjoyed.
Break tasks into one step at a time. If you have a person who refuses to take a bath, first, ask them to just walk down the hall. At bedtime, start with a walk to the bathroom. Then get out the toothbrush. Then wash their face. Do one thing at a time until all of the tasks are completed.
Limit choices to two. It is overwhelming if there are too many options. Keep in mind that most people will pick the second choice.
Caring for a person with Alzheimer’s disease is never an easy task, but employing a variety of strategies can help ease the journey.
