A Guide to Living in Assisted Care with Parkinson’s Disease

Deciding on the best type of care for your loved one with Parkinson’s disease can feel overwhelming. While they may want to stay at home, that might not be possible due to disease progression or care partner/ caregiver burnout. In these situations, assisted living for Parkinson's patients may provide the ideal living situation for your loved one.

 

Some people might have negative assumptions when they hear “assisted living.” But assisted living facilities (ALFs) are true communities that provide specialized care for those that live there. And ALFs offer more services than independent living. Residents often have their own room or apartment with access to common areas and a variety of scheduled social activities. 

Other assisted living services include:

• Laundry and housekeeping
• Help with using the toilet
• Daily meals in a communal dining room
• Help with daily living activities (like bathing or getting dressed)
• Assistance with medication 
• Exercise programs

Most assisted living facilities don’t specifically serve those with Parkinson’s. But because Parkinson’s affects your muscles and your brain, the services offered can be of great help.

While all assisted living facilities offer similar services, each facility can vary from one to the next. There are a number of things to consider when researching assisted living for Parkinson's patients. Some features to look for in a facility include:

• The condition of the facility and the outdoor spaces
• The friendliness of the staff
• Which activities and fitness classes are offered
• What types of food are prepared for the daily meals

Because those with Parkinson’s have specific care requirements, the following factors should be considered as you evaluate assisted living facilities for Parkinson's patients.

• The staff-to-resident ratio, and if that changes between day and night
• If the staff has Parkinson’s training
• If they will take your loved one to the hospital if there is a medical emergency
• How the staff develops a care plan for its residents
• How the staff distributes/schedules medication
• Whether there are rehabilitation services provided
• Can you hire someone to provide rehabilitation services for your loved one

 

“One of the things we encourage is that people living with Parkinson’s have the highest and best quality of life possible — and that they live in the least restrictive environment possible,” says John L. Lehr, CEO of the Parkinson’s Foundation. “To be sure, people like to remain in their homes and be around familiar spaces and people, so as long as they can do that safely and without any concern, we think that’s good. But Parkinson’s is progressive and degenerative, and there does sometimes come a point where being home with a spouse or caregiver becomes no longer safe. At that point we would encourage, along with input from a physician and others, that they consider a different environment, including assisted living.”

 

It can be challenging to know when and if the time is right for a Parkinson’s patient to move to assisted living. There are many signs to keep an eye out for when trying to make this decision. Ask yourself if your loved one:

• Has lost a noticeable amount of weight
• Isn’t keeping up with personal hygiene
• Is suffering from frequent falls
• Can’t remember to take their medications
• Has let their mail go unopened
• Is no longer taking care of their pets or plants
• Has allowed their home to become dirty or cluttered 
• Hasn’t thrown away expired or spoiled food
• Has isolated themselves from friends and family

In some cases, someone with Parkinson’s may prefer an assisted living facility to their home. They may seek the care and sense of community a facility offers. Other reasons why assisted living might be the right choice:

• The caregiver may not be able to continue providing care, due to a job or other conflicts.
• The home is no longer safe or practical for someone with Parkinson’s
• 24-hour care provided by a skilled nursing facility is not needed

The Parkinson’s Foundation provides a list of suggested requirements for anyone who cares for a loved one living with the disorder. If any of the following criteria are not met, an assisted living facility may be the better option:

• The designated caregiver should have few other responsibilities not related to the person with Parkinson’s. If you have a job, it will be difficult to provide comprehensive home care. If the designated caregiver is someone you hire to provide around-the-clock care, consider the impact of someone else living in your home. Even though you are not responsible for daily caregiving chores, having another person in your house might cause stress and make it difficult to relax in your own home.
• The house must be large enough to comfortably accommodate the needs of the person with Parkinson’s, including space for a walker, wheelchair, bedside commode, or other medical equipment.
• All rooms should be on one level. The home environment must be
safe and supportive of maximum independence. Necessary structural changes, such as ramps, handrails, bathroom alterations, etc. have been made.
• Arrangements should be made to provide medications to the person with Parkinson’s at required times, as well as meals, assistance with personal care, housekeeping, transportation, and companionship.

There are certain circumstances which allow for those with Parkinson’s to continue living in their home. If your loved one is contemplating staying at home, the Parkinson’s Foundation recommends the following criteria:

• The designated in-home caregiver should have few other responsibilities not related to the person with Parkinson’s. Having a job can prove difficult when trying to provide the care needed for your loved one. Caregivers need the ability to attend doctor’s appointments and assist with medications. Caregivers also need time to help with personal care, housekeeping, and companionship. 

• Hiring an outside caregiver can impact the comfort level in your home. While in-home care aides can administer the care needed for your loved one, having an outside caregiver may make it challenging to relax in your own home. 
• Consider a number of home modifications. Installing handrails in the bathroom and in stairways can help prevent falls. Lowering countertops in the kitchen can allow your loved one to reach items easier. There must be enough space in the home to maneuver with a walker, wheelchair, or other medical equipment. It is also helpful if all rooms in the home are on one level. 

If your loved one is in a more advanced stage of the disease — but still a viable candidate for assisted living — you may also consider hiring a private professional home health caregiver to come to the community and provide supplemental care. This will add to the overall monthly cost, but it may be worth it for additional peace of mind.

The national average cost for assisted living is $4,200/month, based on Caring.com's proprietary senior living cost data. Costs can vary depending on location. The monthly fee can be all-inclusive at some facilities. Others may charge extra for group outings or food outside of mealtimes.

While you or another family member may be able to be a family caregiver for a while, it can become more difficult over time. Care partner burnout is a common occurrence amongst those who find themselves caring for a loved one. Being a care partner can be exhausting. You can find yourself feeling angry or starting to withdraw. It is important to rest and take care of yourself so you can be there for your family member. A private professional home health caregiver can be an extra expense. But it can be beneficial to both your loved one and yourself.

If you have decided that assisted living for your Parkinson’s loved one is the right decision, your next consideration may be how to pay for assisted living. Compared to nursing home care or memory care, assisted living facilities for Parkinson’s patients can be more affordable. There are many ways to pay for assisted living:

• Veterans Benefits: If you or your spouse was a veteran, contact the Veterans Administration. You may qualify for benefits applicable to assisted living. A service like Elderlife Financial can help you navigate this process.   
• Life Insurance Policies: You can often cash out a life insurance policy or sell the policy to a third-party company for money to use for long-term care. Expect to get 50 to 75% of the face value of the policy.
• Long-Term Care Insurance: There are two ways to collect long-term care insurance. Some policies have a specified benefit for nursing home care that can be used for assisted living. Other policies can have a particular amount for home care that can be paid to the assisted living facility. 
• Reverse Mortgages: If you own your home or have a small mortgage, then you may be able to take out a reverse mortgage. It lets you cash out the value of your home equity.
• Renting Out Your Home: If you aren’t ready to sell the family home, renting it out can be an option. The income can then be put towards assisted living. 
• Medicaid or SSI: You may qualify for Medicaid if you have a low income or limited financial assets. Supplemental Social Security (SSI) may also be an option if you have a low income and Parkinson’s prevents you from working. 
• Family Resources: Talk to other family members who may be able to help. Someone may be able to contribute money or assets. Others can donate their time to take loved ones to run errands or go to doctor’s appointments. 
• Bridge Loans: There are two types of bridge loans. One is an unsecured line of credit. This pays for the first few months at an assisted living facility while other funds are being prepared, like selling a home. The second is a lower interest, lump-sum loan. This helps fund the up-front entrance fee for a continuing care community.

It is important that your loved one has a comfortable environment where they can thrive. There are a few key factors to consider when making sure their needs are met in assisted living:  

• Find a Community with Experienced Staff: Ask if the staff has been trained in giving care to those with Parkinson’s. 
• Exercise Is a Priority: Make sure the facility has a designated space for exercise for its residents, such as a gym. 
• A Supportive Community Is Vital: Those with Parkinson’s disease can experience an improved quality of life by living in a caring community with others like themselves.

Deciding when and if an assisted living facility would benefit your loved one with Parkinson’s can be a challenge. And figuring out how to pay for it can be complex. But learning what to look for in a community and knowing there are many options to pay for it can make these decisions much easier.

• Finding the right assisted living facility. (n.d.) Parkinson’s Foundation
• How to address and prevent care partner burnout. (2022). Parkinson’s Foundation
• Is a care facility needed? (n.d.) Parkinson’s Foundation
• Long-Term care facilities: Assisted living, nursing homes, and other residential care. (2023). National Institute on Aging 
• Parkinson’s disease. (2022). Cleveland Clinic
• When should I consider assisted living? (2017). Parkinsonsdisease.net