If your loved one recently received a diagnosis of Parkinson's disease, you have many important decisions ahead of you as a caregiver. One of the most important is choosing the best living arrangement for their health, safety, and well-being. Since this is a degenerative disease with no cure yet, you'll need a long-term perspective to ensure the level of care meets your loved one's needs now and in the future. Assisted living is often an ideal setting to care for individuals with Parkinson's disease, since its effect on motor skills can impair daily living.
Let's talk about the symptoms of Parkinson's, how to choose the right setting, when assisted living might be best, and tips for finding the right facility for your loved one.
Understanding Parkinson's Disease
Parkinson's Disease Symptoms
According to the American Parkinson Disease Association, Parkinson's disease is a type of movement disorder that can affect the ability to perform common, daily activities. As a condition of the brain and central nervous system, Parkinson's disease is characterized by trembling, muscle stiffness, slow movement, and impaired balance.
However, what most people don't realize is there's much more to the disease. There are many non-movement related symptoms. They vary from person to person, but as you can see, these can greatly complicate the movement symptoms and can necessitate additional care.
- Emotional and mood changes
- Cognitive changes or dementia
- Hallucinations and delusions
- Orthostatic hypotension (sudden drop in blood pressure when standing from a sitting or lying position)
- Sleeping problems
- Constipation or urinary problems
- Skin problems
- Pain (associated with muscle and joint rigidity)
- Fatigue and loss of energy (may result from other symptoms)
- Sexual problems
- Muscle cramps and dystonia (from the variation of dopamine levels that trigger muscle contraction)
- Vision problems
- Excessive sweating
- Loss of smell
- Weight loss or weight gain
- Impulsive behaviors (due to the side effects of medication)
- Excessive saliva (due to difficulties swallowing)
- Speech difficulties characterized by a soft and monotone voice
Stages of Parkinson's Disease
Not every individual with Parkinson's will experience all the symptoms, and if they do, it won't be in the same order or intensity. However, there are typical patterns of progression in Parkinson's disease, which are defined in stages. Doctors use two scales to help them understand the disease's progression. Hoehn and Yahr stages are used to describe motor symptoms, while the Unified Parkinson's Disease Rating System (UPDRS) is more comprehensive and accounts for mental functioning, mood, and social interaction. Here is a summary adapted from the Parkinson's Foundation:
There is no standard treatment for Parkinson's disease since it's based on the presenting symptoms. Options include prescriptions, over-the-counter medications, complementary therapies (such as supplements, acupuncture or massage), medical marijuana, exercise, and physical therapy. There are two surgical treatments available, but these are usually for those who have exhausted other medical treatments. Unfortunately, there are no current treatments that reverse the effects of the disease, but numerous clinical trials are underway.
Since the average age of Parkinson's diagnosis is 60 years, this adds complicating factors that can affect treatment and care. Older adults may have compromised balance, strength, and healing as well as bone loss, depression, cognitive losses, and dementia. These factors can complicate how Parkinson's medications, treatments, or therapies are delivered and how well elderly patients can tolerate them.
It's important to discuss how your loved one's age-related conditions or other illnesses might affect the treatment plan. Based on your loved one's stage, current level of health, and symptoms, ask your healthcare team what treatment options are available. How well do they manage the symptoms? Do they slow the progression of the disease?
Speak frankly with their healthcare team. This will help you make the best decision. Are you preparing for ongoing medication and therapy or pain management and hospice? It's hard to ask those questions, but they will help you create a safe and comfortable environment for your loved one.
Choosing the Right Setting
Evaluate the Home Setting
With a better understanding of what to expect, it's important to evaluate the current living situation. Much of this will depend on the severity of their symptoms and any co-occurring illnesses or conditions.
- Can we meet their physical and mental needs at home at this stage of their disease?
- Are we worried about falls in the home?
- Does the home need modifications?
- Can we afford any needed modifications to the home for safety?
- How often will someone check on them?
- Are we prepared as the disease progresses?
- At what point are we not able to manage their symptoms?
- Should they be home alone? Can there be someone available to help them at all times of the day?
- Do their symptoms require 24/7 attention right now?
Consider Home Care
You may read through the questions above and decide that your loved one can safely remain at home during the early stages of Parkinson's. If you or your family can't provide the care needed, you could get supplemental support through a home care agency. An in-home caregiver could make meals, help with medications, keep your loved one comfortable, and help with tasks of daily living. However, the healthcare team and family should re-assess regularly to determine if an assisted living facility could offer more comprehensive care than at home. It's also important to note that for individuals who require a lot of home care (having a caregiver present most of the time), the cost of an assisted living facility can be less over time.
When Assisted Living Can Help
Benefits of Assisted Living
One of the most important benefits of assisted living for individuals with Parkinson's disease is a safe environment. No more worrying about falls. You can have peace of mind knowing your loved one isn't struggling with basic tasks, has healthy meals, and a clean home. The assisted living staff can ensure your loved one is taking their medications as prescribed and has transportation to medical appointments. Many facilities also have a visiting doctor and a nurse on staff.
But it's not only the functional services that make assisted living communities helpful to those with Parkinson's. It's the emotional support and recreational opportunities that can enhance your loved one's quality of life. The American Parkinson Disease Association (APDA) recommends exercise to slow the impact of movement symptoms. Many assisted living communities have a regular calendar of exercise programs geared toward their elderly residents with mobility issues. In addition, because it can be physically difficult to complete everyday activities or even get up and move, many people with Parkinson's disease deal with depression, anxiety and isolation. That's why social engagement is so important. A regular recreational schedule of events that appeal to your loved one will raise their spirits.
Think about the long-term needs of your loved one. If the Parkinson's is newly diagnosed, but you've found that they already have difficulty with the tasks of daily living because of other age-related issues, an assisted living facility might be best. And, as much as you may not want to consider this, hospice care providers can come to both an individual's home or their assisted living apartment to provide pain management and emotional support. Often, the staff at the assisted living facility can help you facilitate the arrangements. However, there are a handful of states that do not allow hospice care in assisted living facilities, so be sure to ask.
If your loved one has already advanced into the later stages of Parkinson's it's important to note that assisted living facilities do not provide medical care. If your loved one needs 24/7 monitoring and care, a nursing home may be a better choice. More and more, there are facilities with both assisted living and nursing home facilities on one campus. This allows residents to shift over to nursing home care as their needs increase. It's reassuring to know that your loved one is already in a facility that can handle their changing care needs. Some nursing care homes have a skilled nursing unit, specifically designed for patients who require more medical care. This might be needed if your loved one has surgery. They could be released to the skilled nursing unit immediately following hospitalization and then transferred to the assisted living or nursing home as they recover.
Choosing an Assisted Living Community
Where to Begin
As a starting point, keep a list of standard questions so you can compare answers. AARP provides a printable resource Caregiver Checklist for Evaluating Assisted Living Facilities. Their checklist covers everything from safety to resident rights to fees. Be sure to add your own questions related to the needs and preferences of your senior, such as whether pets are permitted, if couples can live together, how they welcome LBGT residents, and if they have bilingual staff.
Check out online overviews and reviews on third-party sites. Ask your doctor, family, friends, neighbors and clergy about their experiences. Tour several facilities once you've narrowed down your list. We recommend making multiple visits. Late morning and mid-day hours are usually the best times to get a feeling for the day-to-day operations.
Parkinson's Disease Questions
Choosing an assisted living community specifically for Parkinson's disease can be a little more complex and require more research. Consider these additional questions as you look at assisted living facilities:
- Do you have any exercise programs specifically for Parkinson's? Ask about aquatic exercise, since this can be a great way to increase muscle strength and endurance. Programs like modified yoga and Tai Chi are also helpful.
- Do you have a dietician on staff that understands the unique needs of Parkinson's patients?
- Have your dining and other staff been trained on issues related to eating? Swallowing difficulties such as clearing the throat when eating or a "gurgling" vocal quality during meals are common.
- Is there always a nurse on duty at your facility? Since assisted living facilities are regulated state by state, be sure to understand the requirements, as well as what they can provide/treat.
- When does a physician visit the residents? What does he/she do? How is information communicated to their primary care physician?
- Can their physical or speech therapist provide services in their apartment?
- Is hospice care permitted?
- Are there additional costs for transportation? This is especially important if your loved one will need frequent trips to the hospital or for therapy, if a family member cannot take them during the day.
- What are your procedures for responding to an emergency medical incident? You want to make sure you loved one is promptly transferred to a hospital if needed.
Hopefully this has given you the information and resources to find the ideal living situation for your loved one. Parkinson's disease presents itself differently for everyone -- and advances at a different rate. It's important to constantly reevaluate needs and choose a setting that can accommodate care at all stages of illness.