Everything to Know About Assisted Living for Parkinson's Patients

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

Parkinson’s Disease (PD) is a highly variable and potentially debilitating neurological disease. For many people who are first diagnosed, symptoms can be mild, and treatment efforts might slow the disease’s progression.

As the caregiver for someone with PD, you may have managed your loved one’s care until such time that symptoms become too challenging to cope with.

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For many, considering assisted living is a logical and reasonable alternative in providing safe, consistent care. 

What’s an Assisted Living Facility for Parkinson’s Patients?

While there is no dedicated specific kind of facility for patients with Parkinson’s alone, it does not mean that nursing homes will not know how to care for a loved one with PD.

Any assisted living should be prepared to deal with PD residents, just as with any other neurological or medical conditions that affect people as they age.

According to the Parkinson’s Foundation, one million people will be living with Parkinson’s Disease by 2020, and over 60,000 people are diagnosed each year. That is a lot of people who need help. 

The average age of onset of PD is 56. The older someone is at the time of diagnosis, the more severe the disease is likely to be. So based on the age of diagnosis, there may come a time when assisted living is needed to care for someone adequately.

Generally speaking, Parkinson’s symptoms worsen with time and are identified in stages of progression. But each person will progress quite differently, and some people will require assistance earlier and others later.

Patients with Parkinson’s may need help with the following things:

  • Walking
  • Balance issues
  • Tremors
  • Rigidity
  • Problems swallowing
  • Difficulty standing without assistance
  • Drooling
  • Freezing
  • Speech issues
  • Depression
  • Bladder control
  • Thinking difficulties
  • Fatigue

Not all patients with Parkinson’s will experience all of these things or have them all as they age, but it is important to recognize that physical limitations can be difficult to manage.

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What Things Should You Look for in an Assisted Living Facility for Parkinson’s Patients?

Most assisted living communities will be prepared to help a resident who has PD, but you want to make sure that they can attend to your loved one’s unique needs and symptoms.

PD is an unusual neurological disorder, and worsening symptoms may not be a concern now but could be later. As you choose an assisted living facility, there are some things to be aware of.

Availability of staff to help

Assisted living communities have dedicated staff available to help up to a certain point. The cost of assisted living is usually a base rate with tiers or care levels based on how much care your loved one requires.

If those needs exceed what the staff can provide, you may have to pay for additional outside help. For example, if your loved one needs help getting out of bed each morning and getting dressed, assisted living staff may not be available to assist with this.

You may also want to find out the requirement for moving to memory care from assisted living. Having that information can help you plan accordingly by intervening in any problems early on to delay memory care for as long as possible.

Meal preferences and requirements

Some people with PD have swallowing problems and require modified diets. You will want to find out if the kitchen can accommodate special diets like a mechanical soft diet.

People with Parkinson’s need a healthy, varied diet, and too much protein can interfere with certain PD medications. Talk with the director of food services to ensure that they can accommodate dietary preferences and requirements. 

Activities

Mental and physical activities are vital for all residents in a nursing home, but especially residents with Parkinson’s. In the beginning stages, exercise is crucial for maintaining strength, flexibility, and endurance.

Ask to see the activities schedule and speak with the activities director about the kinds of activities that would be particularly helpful for your loved one.

For some people with PD riding a stationary bike can be a safe and useful way to get necessary exercise. Make sure that there are bikes available in the workout area. Is there someone available to monitor activity in the gym if necessary?

The other consideration with any group activities in assisted living is the stigma that sometimes comes with having PD. The rigidity, tremors, and problems speaking can make it challenging and embarrassing for someone to connect with other residents.

Expressing these concerns to the assisted living staff will help them make the accommodations necessary to help your loved one feel welcomed and included.

Mental health services

Depression is common in people with PD, with estimates of up 50 percent of those afflicted by Parkinson’s also suffer from depression. It is important to remember that it is not the responsibility of the assisted living facility to treat depression or any other mental health disorder.

Still, an awareness of the issue and referral to available resources is a bonus. Also, it can be helpful if staff members recognize signs of depression and report them.

Memory care

There may come a time when memory care is necessary, as Parkinson’s dementia affects 50 to 80 percent of those with Parkinson’s. The symptoms of dementia can include problems with memory and concentration, hallucinations, delusions, sleep disturbances, and depression and anxiety. 

Assisted living communities may not be able to handle these symptoms, and it may be that memory care is the only option.

If memory care is part of the assisted living community where your loved one lives, the transition could be more comfortable. Even though you may not need it now, you would be wise to take a look at the memory care community as well, just in case. 

How Do You Know If You or a Loved One Are Ready for This Type of Care?

Deciding on whether your loved one is ready for assisted living is very individual and depends on several factors:

  • If you have reached the point of caregiver burnout, it might be time to consider assisted living.
  • Your loved one’s care needs exceed what you or home care can provide.
  • Safety is an issue that can’t be managed at home.
  • Social isolation and loneliness are a concern for your loved one.
  • Dementia-related symptoms like memory or concentration problems have become too difficult to handle. 

Tips for Finding the Best Assisted Living Facility for a Parkinson’s Patient

Finding the best assisted living community for someone with PD is not too different than finding one for anyone else. The critical thing to keep in mind is that someone with Parkinson’s Disease is likely to get worse.

Having some idea of the disease’s trajectory will help you make informed decisions. Talk with your loved one’s doctor to get a picture of the prognosis.

Cost of care

If finances are a concern going into assisted living, you will want some idea on how to pay for assisted living, especially as your loved one’s care needs increase.

You may have to consider private home care in addition to what the assisted living staff can offer. Ask about add-on costs for care and likely yearly increases in base assisted living costs.

Ease of mobility

Assisted living layouts vary from community to community. A large community might be confusing and difficult to navigate. If the only rooms available are a long distance from the elevators, that might be challenging. Long winding hallways can give a feeling of being trapped and claustrophobic.

Would your loved one do better in a smaller or larger room? What about accessibility to the dining and activities rooms? If it takes too long to access those spaces, that can lead to increasing isolation, loneliness, and fall risk.

Nursing availability

Nursing is a part of any assisted living but may be limited. If your loved one has ongoing nursing needs, evaluate whether the assisted living facility can handle those. If not, you might need to consider other options like home health or private nursing. 

Transportation

Most people with PD have to regularly see their physician to assess their condition and manage medications. You may not always be available to transport your loved one to these appointments, so having a robust transportation system is essential.

Some assisted living communities have a very limited transportation schedule, which might not be convenient.

Common areas

Common areas are more important than you might think. Spaces like libraries, theatres, and meeting rooms are places where people naturally gather. Making friends in assisted living for someone with PD can be challenging, so having these spaces creates an atmosphere that is conducive to connection and conversation.

Assisted Living for Patients With Parkinson’s Disease

Assisted living is a good option for people with Parkinson’s but keeping our suggested tips in mind. Your goal is to enhance your loved one’s well-being and keep them safe. Doing this will require special attention to your loved one’s specific needs. 


Sources:

  1. Ribeiro, Marta. “11 Facts About Parkinson’s Disease You May Not Know.” Parkinson’s News Today, 3 August 2017, parkinsonsnewstoday.com/2017/08/03/11-facts-parkinsons-may-not-know/
  2. Wyndham, Lucy. “What to Eat and What to Avoid When Managing Parkinson’s Disease.” Parkinson’s Disease, 23 January 2018,  parkinsonsdisease.net/stories/what-to-eat-and-what-to-avoid-when-managing-parkinsons-disease/
  3. “How are Parkinson’s and Depression Related?” Medical News Today, 27 October 2017, www.medicalnewstoday.com/articles/319831#how-are-parkinsons-and-depression-related
  4. “Parkinson’s Disease Dementia. Alzheimer’s Association, https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/parkinson-s-disease-dementia
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