For Caregivers: Strengthening Bonds with Dementia Patients

If you’re caring for a loved one with dementia, it helps to have patience and a sense of humor. 

Dementia is really the umbrella term for lots of different problems that people have with memory and thinking, says Larry Lawhorne, MD, geriatrician with Wright State Physicians — Geriatrics.

The abilities of someone with dementia may change from day to day. This can be frustrating for caregivers and patients. In time, your loved one will need more assistance to accomplish everyday tasks.

“When we think about dementia, we should think of it as an acquired cognitive disorder,” says Dr. Lawhorne. “The Alzheimer's Association websiteOff Site Icon is very useful for families in terms of preparing for the next few months and the next few years. The book The 36-Hour Day, by Nancy Mace and Peter Rabins, is also very helpful. It shares strategies to manage different kinds of Alzheimer’s behaviors.”

Dr. Lawhorne talks about resources for someone newly diagnosed with Alzheimer’s disease. Click play to watch the video or read the transcript.

What resources do you recommend for someone newly diagnosed with Alzheimer’s disease?

One of the things that we … it’s always a concern of how to talk to the family about what they should do, how should they prepare for what’s to come. We have a course for medical students, a little snippet that we do for medical students and residents called delivering bad news or talking to people about serious illnesses and those sorts of things. One of the things that we emphasize is that it’s almost … it’s like a cancer diagnosis in a way, only worse in many ways. Once you tell somebody they have Alzheimer's disease or once you have this conversation with the person who has it and the family with them, they don’t hear much after that.

What I usually do is I say, “Okay, this is what it looks like. Your history, the lab work that we’ve done, all the other things point toward Alzheimer's disease and this means that you're going to have continuing problems with your memory, continuing problems with your thinking and here’s a little bit of information.” We have some pamphlets and we give them the website for the Alzheimer's Association. “We’ll get back together next week and we’ll spend much more time talking about this next week.”

The Alzheimer's Association website is very useful for families in terms of preparing for the next few months, for the next few years. A book that I like the most is called The 36-Hour Day by Nancy Mace and Peter Rabins. Nancy Mace is a PhD nurse. Peter Rabins is a psychiatrist who’s worked at Johns Hopkins, who’s worked with dementia for decades. It’s a very useful book about how to manage different kinds of behaviors and so forth. It’s really a constant conversation about preparation. It’s a constant conversation because as we’ve talked about, it’s a journey. You're not in there and here’s an antibiotic for your respiratory infection. It’s going to go on for a long time.

 

There are ways to make your time together enjoyable and productive. 

If you have problems meeting the needs of the person you are caring for or if you notice sudden changes in behavior or emotions, ask for help.

Tips for Daily Dementia Care

A person with dementia needs regular exercise and good nutrition. Other activities that may need assistance include getting dressed, using the bathroom and remembering to take medicines.

One way to ensure these daily care duties are completed is to build them into a regular routine. This can reduce stress.

It's important that the person you are caring for feels loved and safe. How you communicate with someone with dementia can improve the quality of the relationship, says the Family Caregiver Alliance. 

  • Keep things positive and simple.
  • Break down activities into easy steps. 
  • If frustration occurs, distract your family member and redirect with another activity. It’s OK to let the facts slide. Instead, focus on the feelings being expressed.

Remember to use your sense of humor. People with dementia retain their social skills — and laugher is good for all of us.

How to Keep Your Loved One Safe

Caregivers of Dementia Patients small

As dementia progresses, it becomes difficult to remember directions or how to perform certain tasks.

To keep your loved one safe, you may want to discourage driving. Make yourself and other family members available to run errands or get to doctors appointments.

Make changes at home to prevent falls and other incidents, including fraud, such as:

  • Removing clutter
  • Removing rugs that may be a trip hazard
  • Adding smoke alarms
  • Locking up harmful household cleaners and chemicals
  • Covering knobs on the oven and stove
  • Setting the hot water heater to 120 degrees or lower to prevent burns
  • Regularly checking food in the refrigerator for expired items
  • Hanging a “no solicitations” sign on the door
  • Getting on the telemarketing “no call” list

Wandering can also be a concern. Talk with neighbors. Let them know about your loved one’s dementia. Give them your contact information so they can reach you if needed.

When to Seek Help

If you have problems meeting the needs of the person you are caring for or if you notice sudden changes in behavior or emotions, ask for help.

Dr. Lawhorne discusses how doctors help patients and families manage the daily progression of Alzheimer’s disease. Click play to watch the video or read the transcript.

How do doctors help patients and families manage the daily progression of Alzheimer’s disease?

In our group, and others are much the same way, I think what people want … We do the diagnosis and we do the treatment but lots of times, diagnosis and initial treatment is started by neurology or started at the Cleveland Clinic or some other place. Then, as the disease progresses, we take care of them because there’s really not a lot that some of the other specialists have to offer at that point. They’ve done a good job up until then but they have all these other people that they need to diagnose and treat. In a good healthcare system, I think, you would see those folks, as they progress, come to geriatricians, to people like us, to family physicians, the internists.

One of the things that I think we offer that’s very important to them is we’ll make the journey with you. We’re being with more than doing to. I think that’s really what they want. They want to be able to call us up on the phone and talk about a problem or talk about something that they did to say, “Was this the right thing?” For instance, a few years ago, a wife called me up and said, “My husband doesn’t think I’m his wife anymore and he wants me to leave.” I was fearful that she was going to ask what should I do but she said, “This is what I did. Tell me what you think.” She said, “I went in the other room. I changed clothes. I brought our wedding album in and I said, “You know, it’s wonderful being married to you. I was just looking at our wedding album.”

I said, “I would have done exactly the same thing,” which actually … The point of that story more than anything else is that we learn so much from patients and caregivers and even people who don’t participate in clinical trials teach us a lot. That’s one that I won’t forget because it was so useful. Not everything works every time but the more caregivers have the opportunity to share things with each other … That’s what our local chapter, the Alzheimer's Association is quite good and they have lots of support groups. That’s a lot of what they do. Their social workers and others in the local chapter will spend time with families and bring support groups together and share those kinds of things. It’s the journey. It really is the journey that is important.

 

Talk with your loved one’s doctor. Doctors, nurses and social workers can connect you to services in your community. 

Larry Lawhorne, MD

Larry Lawhorne, MD

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