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Exploring Next Steps in Care: Financial Impact & Resources That Can Help

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As Parkinson’s disease (PD) progresses, you or your loved one may need more day-to-day help. This article will help you plan for what comes next in care, complete with a list of resources.  

Planning for Care and Financial Implications 

Consider the needs of what care you might be seeking and what financial resources are available to you. Paying for in-home care or a care facility are not covered by insurance. This can become quite expensive. Planning ahead is key to making sure when the time comes there will be an option that works practically and financially for your family. 

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Whether you are a person with PD or a care partner, it’s important to identify care needs early. Have conversations early and often about care planning throughout the disease journey. Doing so can ease future decision-making and provide peace of mind when immediate care is needed.  

Creating a list of your care needs can help ease the transition from independence to receiving support. Discussing preferences with everyone involved ensures clear expectations and establishes boundaries before care begins.  

Planning for care can be challenging but try to avoid making promises — such as never considering a nursing home or hospital — as future needs are unpredictable. Emotions are a natural part of these discussions, so approach them with an open mind and ensure everyone is in the right headspace to make informed decisions together. 

It is a common misconception that insurance may cover in home care or a care facility. Unless a person has a long-term care insurance policy, any care that will be needed must be paid out of pocket. This can be extremely stressful for families as they navigate financial and care needs at the same time. Setting up a savings plan early on or figuring out how to pay for care that may be needed one day can help loved ones minimize stress and lead to better care outcomes. 

When to Consider Outside Help 

As PD progresses differently in each person, everyone’s timeline and care needs vary. Deciding when it’s time for outside help takes consideration. You might need help with smaller things at first, but eventually full-time care might be necessary. It can be hard to accept when you’re in need of full-time care. However, as care needs progress, it might be time to consider outside care options. 

Questions to ask yourself as a care partner when considering outside help: 

  • Physical Limitations: Am I physically able to handle all the caregiving tasks required? Am I getting enough sleep each night to continue to care for my loved one? 

  • Emotional and Mental Strain: Do I often feel overwhelmed, stressed or anxious? Am I able to find time for self-care and activities that recharge me? 

  • Increased Care Needs: Do I feel confident in managing all aspects of care required? 

  • Safety Concerns: Is the quality of care I provide declining due to my limitations? Does our home have safety concerns? Check out the AARP HomeFit Guide. 

  • Personal Well-being: Do I have enough time for my own needs, work or obligations? 

  • Burnout Signs: Am I neglecting my own health needs or experiencing stress-related symptoms? 

  • Lack of Skills or Knowledge: Are there any aspects of caregiving where I could benefit from additional help? 

  • Family Support: Is there tension or strain within the family related to caregiving responsibilities? 

5 Types of Assistance 

There are many types of assistance when it comes to care, including:

1. In-Home Care 

Hiring a home health aide can help a person with Parkinson’s stay at home longer by assisting with daily tasks such as changing, showering, and feeding. However, home health aides are not nurses and have limitations in the care they can provide. If nursing care is needed, a home health aide may not be the best option. When considering this support, consult with the agency to understand the aide’s responsibilities and ensure it is the best fit for your family’s needs. 

In-home care can be expensive and is not covered by insurance or Medicare, so you will need to make a budget or explore financial help that could be beneficial. The cost of care varies by area with hourly rates between $15 and $33. Financial assistance for in home care may be available through a government or community program, long-term care policy, or a veteran’s benefit or pension.   
 
The following national agencies advertise as having staff knowledgeable in Parkinson’s care:  

2. Assisted Living 

Assisted living is a long-term care option that provides personal care support services. Care provides meals, medication management, bathing, dressing and transportation. Some facilities are geared towards helping people with memory and cognitive concerns. 

The cost of assisted living varies depending on the facility, averaging from around $4,000 to $8,000 a month. Insurance may cover assisted living, but only if the individual has a long-term care insurance policy, private pay is the most common. 

Community Partners in Parkinson’s Care is a Parkinson's Foundation membership program for senior living communities and home care agencies. Members complete a full curriculum of Parkinson’s education through trainings. See our full list of sites. 

3. Memory Care 

Memory care is a specialized type of care designed to meet the specific needs of people with memory problems. Some people with PD may benefit from memory care units in an assisted living facility or skilled nurse facility. They have structured activities and staff trained in caring for those with memory impairment. Costs for these facilities vary, averaging from around $6,000 to $9,000 a month.  

4. Long-term Care or Skilled Nursing Facility 

These facilities are for people who require 24-monitoring and medical assistance, and services vary by facility. The average cost of a semi-private room in a skilled facility is $300/day ($8,000/month) and the average cost of a private room is $350/day ($10,000/month).  

If the person with Parkinson’s need to move into a Skilled Nursing Facility, this is not covered by Medicare but can be covered by Medicaid or VA assistance programs. For families who are planning to apply for Medicaid or VA assistance or need to protect resources for a spouse, it may be helpful to consult with an attorney who specializes in long term care. The National Academy of Elder Law Attorneys provides an online directory on the following website: www.naela.org/findlawyer.  

5. Low-Cost Options

These low-cost options can provide help with care:   

  • Adult Daycare: Local centers that provide a variety of services and activities. They include meals, social activities, health monitoring and some offer transportation. The cost varies from $80-100/day, and some insurance companies may cover it. Search for your local Area Agency on Aging for adult daycares near you and the services they provide.  

  • Public Health assistance offices: City or council public assistance offices may offer help with care. Explore local government care options to see what services are provided near you. 

  • Faith-based organizations: Religious organizations may offer care options. If you feel comfortable working with one, regardless of religious affiliation, contact your closest religious organization to ask about resources for you or your loved one. 

Resources Designed to Help with Care

The below national agencies advertise as having staff knowledgeable in Parkinson’s care:  

  • Area Agency on Aging may provide additional home care listings and guidance on eligibility for assistance programs. Call 1-800-677-1116 or find your local here.  

Websites that can help you find local private caregivers. When hiring a private individual, it is especially important to review background checks and references.  

The following guides may be helpful: 

See Our Full List of Care Partner Resources 

Private Care Manager

If you are struggling to find care, hiring a private care manager can help you navigate local services and programs. This can be especially beneficial for long-distance care partners. The Aging Life Care Association provides an online directory of care managers.

Learn More

Learn more with the following Parkinson’s Foundation resources:  

Asking for help is a strength. Emotions can vary during times of seeking care and caretaking. Practice flexibility, patience and self-compassion throughout this process.  

We are here to help. Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) and explore our Resources and Support page.

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