Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part seven of an eight part series.
You’ll notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Medicare and most private insurance reimburse for therapy services. Don’t hesitate to discuss the need for services with your loved one’s primary care provider.
Go to the Experts
Therapists bring a unique perspective to caring for a person with Alzheimer’s. Their focus will be on optimizing the living environment and communication processes.
“It’s not like rehab where the goal is to help recover function,” says Catherine Piersol, Ph.D., OTR/L, Associate Professor, Department of Occupational Therapy at Thomas Jefferson University in Philadelphia. “We focus less on what a person cannot do but rather what they can do.”
Environmental issues like cluttered living space can impact behavior, Piersol explains. Clutter is distracting and unsettling and can lead to a lot of the agitated behavior seen in some people with Alzheimer’s. Occupational therapists do a lot of caregiver education about improving processes to make daily life safer and easier, such as installing bed rails, shower grab bars, removing throw rugs and teaching proper transfers in and out of wheelchairs.
Elizabeth Oloo, a Human Resources Manager in Washington, D.C., says she learned a number of enormously helpful lessons from the occupational therapists who helped her mother. Among them were how to make her home safer, how to effectively move her mother from the bed to a chair, and how to help her bathe and dress.
“They were wonderful and very encouraging and patient,” she said. “The OTs also matched their approach to her mental status and ability on the days they came to our home. If she was a little more confused or agitated, they handled her in an incredible way and worked with her to keep her calm and focused.”
Working with What Works
“Our process is to educate the family to relax the rules. We help figure out what will work for them, and develop new routine that is easier to follow,” says Piersol, who is also the Clinical Director of the Jefferson Elder Care program.
They help caregivers learn to “reframe,” something she calls errorless learning. Nothing is wrong.
“For example, if mom thinks it’s Thursday but it’s Monday, it’s not that big a deal,” she says. “We teach the caregiver to understand it’s not about being right, it’s all about engagement.” Many families say they want their loved one to feel as independent as possible, so they tend to correct rather than just roll with it. Relish the interactions you have, she advises.
“Families tell us that a lot of the psychological stresses are related to self-care issues,” says Piersol, co-author of a guide for caregivers, A Caregiver’s Guide to Dementia: Using Activities and Other Strategies to Prevent, Reduce and Manage Behavioral Symptoms, published by Camino Books, Inc. “For example, don’t say, ‘It’s time to shower’ and get ‘no’. She may be saying no just because it’s a word she knows, but may not understand what ‘shower’ means any longer. Do it in stages, like ‘let’s sit up and walk to the bathroom’.”
While many people with Alzheimer’s and other dementias are capable of walking in the later stages of the disease, they often have balance and coordination problems, which lead to falls.
A physical therapist (PT) can train the muscles to “learn” to respond to changes in the environment, such as uneven or unstable surfaces, according to the American Physical Therapy Association. PTs also teach family members how to safely move, lift, or transfer the person with Alzheimer’s disease to prevent injury to the caregiver as well as the person being cared for and how to use adaptive equipment and devices.
Physical therapy can provide a person with an activity that he or she can perform successfully and it can help to improve breathing, mobility, and endurance. Exercise has been shown to help reduce the restlessness and wandering common in many people with Alzheimer’s and other dementias.
Communication is an area that often leads to frustration and anger for both caregiver and loved one.
“Caregivers need to reduce the complexity of the communication because the person with the disease can’t process it. We help them change the communication approach, like counting to five before repeating a question,” Piersol says. “It’s how you say it and then giving the person time to respond.”
Speech-language pathologists (SLP) are experts in helping the person with dementia preserve communication and can train family members to improve the processes. If the person has trouble swallowing, an SLP can teach compensatory strategies or help alter the diet so he or she can eat without risk of choking.
Here are some helpful communication strategies for caregivers from the American Speech, Language and Hearing Association:
- Repeat key information to help maintain focus
- Give choices rather than asking open-ended questions (“Would you like coffee or tea?” instead of “What do you want to drink?”)
- Keep information and questions short and simple
- Use written cues for activities (such as how to get dressed)
- Use “memory books” to help the person recall personal information
“This is a very challenging disease,” Oloo says. “But having the therapist at home really helped my mother function the best she could and helped my family cope with this struggle.”
Talking the Talk
Speech-language pathologists can help caregivers deal with common communication issues. They include:
- Difficulty finding the right words
- Repeating the same words or phrases again and again
- Substituting words that sound similar
- Inventing new words to describe familiar objects
- Easily losing train of thought
- Difficulty organizing words logically
- Reverting to speaking in a native language
- Using curse words (a strange quirk of diseases that sap language skills)
- Speaking less often, or even not at all
- Relying more on nonverbal gestures to compensate
- Having trouble understanding conversation, questions and instructions
Make Use of the Help at Hand
Medicare and most private insurance reimburse for therapy services received in home or in a facility. Don’t hesitate to discuss the need for services with your loved one’s primary care provider if you begin to notice issues with communication, difficulty with balance or walking, or problems with routine tasks like getting dressed or eating.
Move Forward Patient Guide to Physical Therapy for Alzheimer’s Disease from the American Physical Therapy Association
The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, 4th By Nancy L. Mace, Peter V. Rabins
Living With Alzheimer’s from the American Occupational Therapy Association
Dementia Fact Sheet from the American Speech-Language-Hearing Association