Caregiver Tips for Managing Parkinson’s Disease Dementia

Parkinson’s disease (PD) is an illness largely defined by changes in motor control. Early symptoms include tremors, stiffness, and walking/balance problems. As the disease progresses, many will also develop dementia. Studies have found that Parkinson’s dementia can affect up to 78 percent of those with PD.¹

Caring for someone with dementia

Symptoms like agitation, confusion, memory loss, hallucinations, and delusions may occur 10 to 15 years after the initial PD diagnosis. Not all people with PD will experience Parkinson’s dementia.²

Impact on caregivers

It can be hard to watch your loved one’s motor and mental abilities decline. You may also find that your caregiving duties have caused you to sacrifice your own hobbies, time with friends and other family members, and hours at work.

It is normal for you to feel a range of emotions about your loved one’s condition and your responsibilities as a caregiver, including frustration, sadness, and anger.

Having the right resources and support can help you adjust to your new normal as a caregiver of someone with Parkinson’s disease dementia. These tips can ease some of the challenges that you may face.

Patience and redirection

Patience and the ability to redirect a loved one’s energy are important skills for caregivers. You may feel frustrated when your loved one leaves the water running, forgets to put on pants, or cannot recall details.

It is important to remember that you are frustrated at the disease, not the person. Their forgetfulness cannot be changed, but there are steps you can take to redirect your loved one:^3,4

• Lie out their clothes in the order they should put them on.
• Acknowledge their frustration, then suggest a different activity like going for a walk, doing a puzzle, or having a snack.
• Use simple phrases and give limited choices, like “Do you want an apple or a banana?” or “Would you like to read a book or listen to the news?” If they do not understand, repeat the question.
• Avoid open-ended questions or ones that rely on short-term memory.

Install signs in your home

In many cases, people with mild or moderate dementia can still read. While they may not remember the way to the bathroom or important phone numbers, they can read signs or notes with needed information. Signs such as these may be helpful:^3,4

• “Hot” and “cold” labels on water faucets
• A “stop” sign by outside doors to help prevent wandering off
• Arrows directing to bathrooms
• “Hot” or “Do not touch” warnings in safe spaces by the stove or oven
• Reminders like “Carol will be home at 4 pm” or “Do not let the dog outside”
• Phone numbers for loved ones, doctors, 911, and poison control, along with a description of what they are for

Improving safety

Those with dementia may not know what is safe and what is not. In a confused state, they may try to wander off. Their senses of taste and smell may be altered, which can also impair their ability to make safe choices. You can take steps to improve safety:^3,4

• Install and regularly change batteries for smoke and carbon monoxide detectors.
• Put away lotions, toothpaste, detergents, shampoo, soap, etc., since they may smell or look like food.
• Install locks up high or down low. A person with dementia may not look for these beyond eye level. Key or number code locks can also be helpful.
• Add safety locks on doors and cabinets, outlet covers, and safety gates for steps.
• Guns, knives, power tools, cleaning products, alcohol, and drugs should be locked away.

Occupational therapy

Occupational therapy (OT) helps people with injuries, illnesses, or disabilities do many of the daily activities they need and want to do. Caregivers can identify areas in which improvement is needed, such as dressing, navigating stairs, walking to the bathroom, or preparing a sandwich. Occupational therapists then work with the person to address those skills.

One study found that after 12 weeks of OT, people with dementia were able to better function at home.⁵

Take breaks

Caregiving is hard work, and it is normal to need a break. Breaks help you recharge and tend to your own health. Schedule regular time for self-care before you feel stressed or overwhelmed. Here are some tips for ways to take the breaks you need:^3,4

• Ask friends, family members, or a neighbor to relieve you from caregiving duties for a few hours.
• Hire a home health worker to help with more difficult tasks, such as bathing your loved one.
• Have your loved one stay at a memory care facility for a few days or weeks. You will have an extended break while they are cared for in a supervised, safe environment.
• Join an in-person or online support group for caregivers.