FOR THE CAREGIVER OF A PARENT WITH PARKINSON’S

Do’s and don’ts for caregivers of parents with Parkinson’s psychosis

Last updated Oct. 1, 2024, by Susie Strachan

If you have a parent with Parkinson’s psychosis, caring for them can be tough at times. This sometimes surprising symptom of Parkinson’s disease can cause them to see things that are not there, experience delusions, and have changes in behavior.

Ling Pan, MD, a neurologist at Robert Wood Johnson University Hospital and Rutgers Health in New Brunswick, New Jersey, says it can be frustrating when your parent insists they are seeing or hearing something you know isn’t real.

“For either children or spouses, it is incredibly difficult to see your loved one suffer,” she says. “And especially if this causes a change in their personality, i.e., aggression, irritability, paranoia.”

But by knowing what you can do to keep your parent feeling safe and understood while trying not to unintentionally cause distress or frustration can help make caregiving more manageable and compassionate.

Caregiving do’s

To better understand what your mother or father is experiencing, start by asking about what they’re seeing or hearing, suggests Pan, who treats patients who have Parkinson’s psychosis.

What do you see?
Are you bothered by what you see?
Can you tell if what you see is real?
Are you feeling frightened or confused?

“Many times, the hallucinations are not distressing, and it may be less stressful for you as the caregiver and for the patient to simply acknowledge that the hallucination exists for the patient, rather than insist that it is a hallucination,” Pan says.

Your parent might know they are seeing or hearing things that aren’t actually there but may still find it difficult to fully separate these hallucinations from reality.

Help them cope with this insight by talking about what they’re seeing and feeling. Simple physical actions like sitting together, holding their hand, or guiding them to a different room may help shift their focus.

Pan notes that if the hallucinations are causing distress or disruptions in daily routines — when hallucinations are interfering with their ability to sleep, eat, or engage in regular activities — more intervention may be needed. This could include making changes to your parent’s medication or seeking support from a mental health therapist.

There are a number of strategies you can try to help decrease your stress and increase your parent’s comfort even during psychotic episodes.

Practice empathy

Christopher Norman, a board-certified geriatric nurse practitioner with the National Council on Aging, says it’s best to handle conversations about hallucinations and delusions with care and understanding.

“It’s important to acknowledge your parent’s experiences and offer reassurance without dismissing their thoughts,” says Norman, who works as a primary care provider for seniors in New York.

See the world from their perspective

Understanding your parent’s experiences involves more than just acknowledging their perceptions. It’s also important to validate them.

Norman suggests instead of redirecting their attention during a hallucination or delusion, it’s more effective to affirm what your mother or father is seeing or hearing.

“If the hallucinations are threatening and the person is scared,” he says, “try helping the person move to another location, or go for a walk, using words like, ‘OK, let’s move away from what’s scaring you.’”

By adopting this approach, you can empathize with your parent’s reality and hopefully help them feel calmer and safer.

Consult healthcare providers

If your parent’s hallucinations become more frequent or more severe, or if they’re feeling confused, agitated, or aggressive, contact their healthcare team.

According to Pan, there may be situations where your mother or father appears to be a threat to themselves or others.

“Every-now-and-again instances are one thing,” she says, “but when concerning behaviors start to generalize to lots of different situations, environments, or circumstances, this can signal that an adjustment in treatment plan may be warranted.”

Your parent’s healthcare provider may ask you about triggers that often can worsen psychosis, such as:

new stresses in their home environment
recent illness where you or your parent lives, such as an infection with fever
not eating nutritious food and staying hydrated
how well they are sleeping.

“A healthcare professional [may] perform a physical examination and possibly diagnostics [lab tests, imaging studies] to help determine why these symptoms have occurred,” Pan says.

Evaluate and adjust medications

Pan points out that some medications for managing the motor symptoms of Parkinson’s can make psychosis worse.

She suggests having a conversation with your parent’s healthcare provider about whether adjusting Parkinson’s medications may decrease hallucinations.

If the doctor believes the Parkinson’s medications aren’t causing the psychosis but your parent is still experiencing symptoms, they may suggest trying medications that directly treat psychosis.

“The challenge in using medications for Parkinson’s related psychosis is that usual antipsychotic medications can exacerbate the motor symptoms of Parkinson’s,” Pan says. “Therefore, there are only a select few medications that are used.”

Create a safe and familiar environment

A home environment incorporating elements that are comforting and recognizable to your parent — such as organizing their living space to mirror their previous home and having mementos like family photos — can help them feel safer and better support their emotional stability.

Try to reduce the disorientation that comes with Parkinson’s psychosis by sticking to a daily routine and minimizing distractions from noise and activity, such as turning off the TV and closing windows.

“Maintain a calm environment, as too much stimulation can worsen hallucinations,” Norman says.

You also may want to consider turning on more lights in the evening to reduce visual hallucinations. Arranging furniture so there are clear pathways may decrease the risk of your parent tripping and falling.

Take advantage of respite care

Respite care, which gives a caregiver a much-needed break from the demands of caring for a loved one, can help you maintain your own well-being.

Respite care may be for a few hours, a few days, or even longer. Respite care should provide you with the opportunity to rest and recharge, so that you return to caregiving feeling refreshed and more capable of supporting your parent and their health needs.

Plan for your parent’s future

It may be uncomfortable and upsetting to think about the later stages of the disease. But you should try to face where your parent’s situation is probably heading and start to prepare for the day when your mother or father cannot safely live at home.

“If the hallucinations or delusions are very severe,” Pan says, “caring for the person at home may be more taxing on the primary caregiver than if the patient is in a care home.”

For more support and guidance in what would be the next steps if you moved your parent from their home, discuss the options with other family members. Also, consult your parent’s healthcare team for suggestions and guidance.

You should research the various options, such as assisted living and specialized care homes. Consider visiting potential places to evaluate whether they provide a supportive and safe atmosphere and have the expertise to care for a person living with Parkinson’s disease, especially one who has psychosis.

While looking at long-term care choices, take time to draw up a response plan for emergency care to help reduce the stress of unexpected challenges.

“If a crisis happens, who do you call and where will the person go? A little bit of planning can make crisis situations feel far more manageable than living moment to moment hoping that nothing bad will happen,” Norman says. “Because bad things do happen and burnout is a real thing that often creeps up on you.”

Get support

Your parent’s healthcare team, along with organizations dedicated to improving the lives of people living with Parkinson’s psychosis and their caregivers, can offer you information and support.

Start by speaking with your parent’s primary healthcare provider and other members of their healthcare team, such as their neurologist and geriatrician. Ask for references for other specialists, such as clinical social workers, who can assist with emotional support and counseling, and connect you with community resources and support services.

“Social workers can be helpful for providing local resources and information on obtaining additional care for patients with severe Parkinson’s related psychosis,” Pan says.

Other ways to find support include:

joining support groups for caregivers of people with Parkinson’s disease
contacting professional caregiving services that offer in-home care and respite care.

Nonprofit organizations focused on Parkinson’s disease can provide resources, educational materials, and assistance with finding local services and support, including:

Parkinson’s News Today is a resource for the latest news about Parkinson’s, columnists writing about life with the disease, and online forums and social media platforms, including Facebook and Instagram.

Caregiving don’ts

Even with the best intentions, caregiving for a parent with Parkinson’s psychosis can have its share of missteps.

It’s completely normal to stumble along the way, perhaps by misjudging how to handle hallucinations and delusions, neglecting your own self-care, or trying to do it all.

Being aware of common challenges can help you feel better prepared and more confident in your caregiving role.

Don’t argue or correct

Arguing or attempting to correct your parent when they are experiencing psychosis symptoms can be counterproductive and may even make their distress worse.

The hallucinations and delusions feel real to them, so confronting these perceptions can lead to increased confusion, anxiety, or agitation. Instead of providing clarity, arguing may deepen their sense of insecurity or paranoia, putting more strain on your caregiver-parent relationship.

“Remember that you’re approaching any conversation from two different perspectives, and arguing or trying to prove that you’re right to a person that may be hallucinating just involves everyone getting frustrated and upset,” Norman says.

Instead of trying to dispute or change their delusions, focus on providing calm, reassuring responses. Try to empathize with their situation and validate their feelings. Imaginary or not, what they are experiencing is often very real to them.

Also remember that, no matter how upsetting it is to hear your parent talking in this way, these hallucinations and delusions are caused by the disease, not by how they feel about you.

Don’t ignore triggers

Triggers can increase your parent’s hallucinations, delusions, or confusion, making psychosis more difficult to manage and potentially leading to a more severe episode.

Common triggers include:

changes in medication, whether starting new drugs or changing doses
stressful situations such as moving, conflicts, or changes in routine
disruptions to sleep
physical discomfort or illness.

Ignoring triggers can affect your parent’s safety, as an increase in agitation or confusion might lead to risky behaviors or accidents, such as forgetting to turn off the stove, trying to leave their home, or tripping over objects.

Keeping track of your parent’s potential triggers can help you manage their symptoms more effectively.

Write down your parent’s symptoms in a notebook or a health-tracking app, including the timing, duration, and intensity of the hallucinations or delusions.
Monitor changes in medication, significant sources of stress, their sleep patterns, and physical health issues.
Note disruptions to your parent’s routine, such as changes in daily activities, new environments, or different caregivers.

Ask your parent’s healthcare provider for advice on recognizing specific triggers and how to reduce their effects.

You should also share your observations with your parent’s healthcare providers and your family members, so everyone is aware of the triggers and can avoid conflicting management strategies.

If your parent becomes agitated or aggressive, try to remain calm and reassure them they are safe. If you are concerned your parent may pose harm to you or themselves, seek medical help or call 911 and explain that your parent has Parkinson’s disease and psychosis.

Don’t try to do it all

Taking on too many responsibilities and attempting to manage every aspect of care without help can result in you becoming physically, emotionally, and mentally exhausted.

Perhaps you find yourself skipping meals, losing sleep, turning down social activities, or withdrawing from friends and family, which can further add to feeling lonely and stressed.

Instead of trying to do it all, help yourself by:

reaching out to family members and friends to share responsibilities and delegating tasks
hiring trained caregivers to manage specific aspects of your parent’s care.

Be sure to make time for yourself, engage in activities that bring you joy, and maintain your own health.

“Remember that Parkinson’s disease is not anyone’s fault, and the things that your loved one is doing that stress you out are not being done on purpose or to make you upset; as a person’s brain changes, behavior changes,” Norman says. “Seeking support and recognizing your limitations are signs of strength and help with your ability to care deeper and longer.”

While your parent may seem confused, irritated, or paranoid during a psychotic episode, don’t take these outbursts personally. Their behavior is a result of the disease, not a reflection of your caregiving.

Pan says that to avoid caregiver burnout, it’s better to ask for help sooner than later.

“It is also OK to admit when you are stressed from caring for a loved one, and it does not mean that you have failed or been lacking in any way,” she says.

Reframe how you think about what asking for support means. It is not a sign of weakness or that you can’t handle the situation. It’s a proactive step toward managing both your well-being and the quality of care you provide to your loved one.

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.