Later stages of Parkinson’s psychosis: Options for care

Last updated Sept. 16, 2024, by Lindsey Shapiro, PhD
Fact-checked by Patrícia Silva, PhD

As Parkinson’s disease psychosis advances, its symptoms may increasingly interfere with your parent’s daily life — and even yours, too. It may also mean your parent needs additional care and monitoring.

Often, children of parents with Parkinson’s disease may find themselves taking on the responsibility of making advanced care decisions as managing psychosis becomes too challenging.

While Parkinson’s hallucinations — imagining things that aren’t there — may start off as mild and not very disruptive, they can become hard to deal with as your parent loses their ability to understand what they are perceiving isn’t real.

Delusions, or beliefs not based in reality, may be the most troubling and distressing aspect of advanced Parkinson’s psychosis. Such beliefs, which feel real to the person experiencing them, can cause behavioral issues, including agitation, aggression, paranoia, and defiance. For instance, your parent may think someone, including possibly you, is trying to hurt them.

“My father experienced hallucinations, typically of people in his visual field who were not actually there,” says Jeffrey M. Simon, PhD, a retired clinical psychologist whose father, David, had Parkinson’s psychosis.

He also said his father called the police multiple times about reported break-ins to his house.

While it can be extremely difficult for a caregiver to manage these symptoms on their own, it is especially challenging if other motor and nonmotor symptoms of Parkinson’s are also taking a toll. In the advanced stages of Parkinson’s, you as a caregiver are likely navigating many complex challenges based on what your parent is experiencing, including significant mobility problems, cognitive declines, and sleep issues.

When delusions have led to extreme behavioral issues, it may not be safe for either your parent or you to continue as a caregiver without more help.

At this point, you may be dealing with difficult decisions about additional or different care for your loved one, including the possibility of moving them to a nursing home.

A number of care options can provide support and relief in the later stages of Parkinson’s psychosis. To find the best fit for your parent and family situation, you should consult with your parent’s care team.

Options for care

It can be a stressful and emotional process to realize your parent with Parkinson’s requires more help than you are able to provide. Also that more advanced care options may not only be necessary, but may also be the best and safest option for your loved one.

As a caregiver, you should work alongside your parent and their healthcare team to make the best choice for care.

Getting extra support might at first involve hiring a nurse or aide to come to your parent’s home and help out regularly or everyday.

If more help is needed — for example, if you don’t live close to your parent with Parkinson’s — hiring someone for live-in care, who would live at your parent’s house and provide round-the-clock support, might be an option.

“I attempted to extend the time my father spent in his home for as long as possible by having live-in care reside with him,” says Simon.

Deciding on nursing home placement

At-home care may not always be financially or practically feasible. Eventually, you may have to decide to move your parent with Parkinson’s into a care facility.

Simon realized at-home caregiving was no longer an option “as it became increasingly clear that [my father’s] functioning had declined to a point where he could no longer take care of himself.”

While an extremely difficult decision to make, a care facility may be necessary if your parent is having significant psychosis-related behavioral changes, especially if it is making them a danger to themselves or those caring for them. In fact, persistent psychosis is one of the main reasons people with Parkinson’s are placed in a nursing home.

Nursing homes, also known as skilled nursing facilities, typically offer 24/7 access to medical help by having a full-time nurse on-site at all times and a physician on call. This can help make sure your loved one is safe and taking their medications as prescribed.

When choosing a facility, it is a good idea to visit a few different ones to best understand what resources they have and how well equipped they are for managing Parkinson’s psychosis.

It may be difficult to find placement for a parent experiencing psychosis, as even centers that specialize in memory and dementia care are not always able to handle the significant behavioral issues associated with psychosis. Families should talk with their parent’s healthcare providers about local resources for finding the right nursing home.

Financial considerations

Outside care, both at home and at a nursing facility, can be expensive. You shouldn’t assume that your parent’s health insurance will cover such services, so it’s important to carefully review your parent’s finances. If there is a possibility you might need to contribute to their care, you should also look at your own financial situation.

Various resources may be able to help including the following:

• The Department of Veterans Affairs covers some costs for former members of the armed services.
• Medicare covers nursing home costs for qualified individuals who meet certain criteria.
• Medicaid covers nursing home placement and some home-based services.

Some organizations also offer monetary assistance for Parkinson’s care, including the American Parkinson Disease Association Financial Hardship Fund and the Melvin Weinstein Parkinson’s Foundation.

Ensuring a smooth transition

Regardless of which option you choose, it is likely to be a challenging and stressful time for you and your parent. Adjusting to this new normal takes time and is not always easy. It is important to be patient, but there are a few things you can do to make the transition as smooth as possible.

It may be difficult for your parent with Parkinson’s to accept that their disease has advanced to the point where they need additional help, especially if it involves leaving their home. Include the patient in care decisions as much as they wish and are able to be involved; it can go a long way to helping them feel more at peace with the choice that is eventually made.

If possible, talk with your parent about their wishes for advanced care earlier on, before significant cognitive, psychiatric, and physical changes make it hard for them to participate in decision making. Understanding their wishes ahead of time also will make it easier on you when faced with making these difficult choices on their behalf.

Other ways to support a smooth transition to advanced care including the following:

• Research and possibly visit care facilities or at-home support options ahead of time, so you are as prepared as possible and know your options before the need arises.
• Create a care plan for nurses or aides who come to help with caregiving in your parent’s home, part time or live-in. Making a care plan detailing your parent’s needs can help ensure that they experience minimal disruptions in their daily life when responsibilities are shared with different people.
• Try to ease the transition to a nursing facility by bringing familiar items from home for their room.
• During your visits, share information — and even a few stories — about your parent with the staff at the facility so they can get to know them better.
• Come up with a visitation schedule that works for everyone. It may be difficult for your parent not to see you every day or as often, especially if you have been their primary caregiver. Knowing when you’ll be coming to see them may help them adjust to the change.

It is normal to have mixed feelings about moving your parent to a nursing home. Reconnecting with relationships or activities that you had previously deprioritized and asking for support from loved ones also can help make the transition easier for you.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.