Navigating the Future with Advanced Parkinson’s Disease

Dr. Gilbert interviews Eleanora Tornatore-Mikesh for her insights on planning for the future with advanced Parkinson’s

Today we continue Parkinson’s Disease: Planning for the What Ifs, a special series of posts that discuss the issues of advanced Parkinson’s disease (PD). Additional background about advanced PD and the full introduction to the series is available if you need it. In previous blogs, we tackled the motor and non-motor symptoms of advancing PD including:

• cognitive decline/dementia, depression, anxiety, apathy
• psychosis, mania and behavioral problems
• falls, extreme immobility and secretion management
• sleep problems
• bowel and bladder problems.

People with PD want to plan for the future and in order to do this, they want to know what level of disability to expect as the disease progresses. They want guidance on how to plan for a future with advancing PD. How do you find a home health aide? When is the time to move out of your house? What are the options of where to go? How do you pay for advancing care needs?  We will address these in our Q&A below.

Guessing the progression

Unfortunately, it is very hard to predict how any individual person’s PD will evolve, and neurologists therefore tend to shy away from answering these questions. To quantify disease progression there is a commonly referenced staging scale, however it does have significant drawbacks.  The  Hoehn and Yanr scale was developed by Drs. Margaret Hoehn and Melvin Yahr in 1967:

• Stage I – symptoms involve one side of the body
• Stage 2 – symptoms involve both sides of the body, or the midline (that is, symptoms affect structures in the middle of the body such as speech abnormalities)
• Stage 3 – symptoms involve both sides of the body, with impairment of balance
• Stage 4 – symptoms have advanced to the point that although the person can stand and walk without the help of another person, he/she has significant disability. People in this stage typically need at least some help to perform their activities of daily living, or self-care activities such as eating, bathing, dressing and toileting.
• Stage 5 – the person cannot stand or walk without the help of another person

As you can see, the Hoehn and Yahr scale focuses solely on motor symptoms and does not take into account the psychiatric, cognitive and autonomic non-motor symptoms that often cause more disability than motor symptoms as PD advances, which is a major downside of this scale. For example, someone may be a stage 3 on this scale, but have as many difficulties as someone who is stage 4 because of dysregulated blood pressure control or a mood disorder.  Unfortunately, scales have not been developed to also quantify the non-motor symptoms and therefore figuring out what stage of PD correlates with what level of actual disability is not straightforward.

In addition, there is no set timeline to how a person progresses through the Hoehn and Yahr stages.  Many people stay at Stage 2 for a very long time, perhaps decades, for example. Many never progress beyond Stage 3. They may develop other health issues as they age which become more prominent than PD. Therefore, although it is very understandable for people with PD to want to know what to expect in the future, in many cases, it is simply not possible to provide this information.

Planning for the Uncertain Future

Despite this, there are still things you can do to be prepared and plan ahead. For this discussion, I reached out to an expert on this topic, Eleonora Tornatore-Mikesh. Ms. Tornatore-Mikesh is President and CEO of CaringKind, an organization based in New York City that works to develop information, tools and training to support individuals and families affected by progressive neurological disease. She has spent her career working with those who are planning for the uncertain future and we asked Ms. Tornatore-Mikesh for her advice on navigating the future with a progressive neurological condition, like PD.

Q: Typically, when a person with PD or care partner asks the physician to explain what their progression of PD will be like, the physician typically answers “Parkinson’s disease is highly variable from person to person and we therefore can’t predict what will happen to you.” How do you deal with this uncertainty?

A: I tell people to rephrase what they are asking. Yes, it is not possible for a doctor to know exactly what will happen to you. Instead, turn it around and ask what you want to know in a positive light: “I know disease progression is variable from person to person, but within the stage of disease that I am now, what can I do to improve my quality of life? What are my wellness opportunities?”

Q: Do you have any tips for our families on how to live well in the face of an uncertain future?

A: I always say: What is good for our heart is good for our brain – that includes exercise, healthy diet, focus on mental health and social support. Concentrate on the positive things that you can control.

Q: Can you advise our families on some practical steps that they can take to plan for the future in the face of uncertainty about what PD will bring?

A: I am big on family meetings. The person with PD can be in the driver’s seat. At the family meetings, you can talk about options for the future and make decisions that allow the person with PD to stay in their home, if that is what is desired. This could mean home modifications or hiring an aide to help in the home.

Another thing to consider is moving out of the family home that you might have lived in for decades, into another private residence that is more amenable to aging in place. For example, a one-level ranch with all the living space on one floor, could be a good option. Often, people don’t have these conversations ahead of time and need to make major changes in a living situation in response to a crisis such as a fall or a medical illness. People are always telling me “I don’t want to move twice. I want to stay in my family home until I have to move.” And I say “Why not move twice?” Move now into a better-suited home, and you could potentially delay or even prevent a move to a more protected environment such as assisted living or a nursing home in the future.

Discover more resources for family members and caretakers here.

Q: When the time comes to hire a home health aide, how do you find one?

A: There are a number of options for finding a home health aide. In some situations, such as if a person has Medicaid, you are able to hire a member of your own family to provide care and that person gets paid. Or that person may get a tax benefit for taking care of you which makes up for their loss of other income. These programs can be complicated with varying rules, so do your research ahead of time about the program in your area, as to who can become an aide and how they get compensated. (This of course assumes you have a suitable family member who is willing and able to take on this role.)

If hiring a family member or friend is not an option, you can contact your local APDA Chapter or Information & Referral Center or the national APDA helpline (1-800-223-2732) for resources on how to find a reputable agency. Your doctor may also be able to refer you to the local Visiting Nurse agency, Agency on Aging, or a local social worker for more resources. American Association of Retired People (AARP) is also a great source of information.

Q: Any tips for questions to ask when hiring a home health aide?

A: Hiring a home aide is not as easy as it seems, but with the right steps you can find a great fit. Spend the time to interview each candidate and call references even if the agency that sent the person to you is well established.  Even with a good healthcare worker, it is the person’s personality that will occupy your sacred space.  In the interview, make sure to ask about things that you consider priorities. For example, is the candidate motivated to help get you or your loved one out of the house and walking?  Think beyond whether the candidate is competent in helping with Activities of Daily Living Skill. It is important to feel that with this person, “you can be you” while being cared for in your home.

Q: How do you pay for a home health aide?

A: The three ways to pay for an aide are: independent wealth, long term care insurance, or Medicaid. Medicare does not pay for home health aides in the long term, although it might pay for an aide in the short term after a hospitalization.

If you are lucky enough to have purchased long term care insurance before you got PD or were provided long term care insurance by your employer, then that is a great way to pay for an aide. The long term care insurance agency will perform their own independent assessment to determine if you are eligible for an aide.

Many people who must pay for care, will need to spend down their money to become eligible for Medicaid.  An elder attorney can help advise you on this process.

Q: Do you have advice for people who are resistant to having an aide, when the family can no longer provide the care on their own?

A: Initially, bring in the aide for socialization only and not for care. Have the aide take the person out for an activity that they enjoy. Allow the person with PD and the aide to get to know each other under these circumstances first. Once the person with PD feels comfortable with the aide, then broach the subject of allowing the aide to administer care.

I also try to emphasize to my families, that it may seem like a financial burden to pay for an aide, but in the long run, paying for some extra help when the person with PD is healthier, may be a very wise decision. With extra help, the person with PD can remain more active and engaged which may potentially prevent a crisis in the future.

Q: What are the clues that it is time to move out of the family home?

A: My rule of thumb is that when it takes more than one aide to help a person with their activities of daily living, then it is time to consider a more protected environment than the one that can be provided in the home. When two people are needed to help the person with PD, you have to consider the possibility that the helpers themselves can get hurt.

As PD progresses, issues such as incontinence may unfortunately arise. This may require toileting and showering multiple times a day, which may not be possible for a single individual.

This is especially the case if the person providing the care is a family member and not professional help. The family member, perhaps a spouse or a child, might have his/her own medical diagnoses to deal with, or other responsibilities, and may find it more and more difficult to provide adequate care for their loved one as things progress.

Q: If you do have to move out of your home, what are the options?

A: The three main options are independent living, assisted living and nursing home.

• Independent living is appropriate for a person who no longer wants to live alone but is able to take care of all activities of daily living on their own. The living facility might provide meals and communal activities.
• Assisted living becomes an option when someone needs more help with activities of daily living such as bathing. In this situation, the staff is more actively involved to provide assistance. There is also typically access to nursing support.
• A nursing home provides hands-on help for those who are dependent for activities of daily living.

Q: What should people look for when researching other housing options?

A: My answer will be a bit unconventional. I think the most important part of housing is not the beauty of the building or size of the new apartment, but what is the culture in the building? Ask to say hi to management or people who work in the dining room. Do they smile? Do they seem happy? Are the housekeepers friendly? And then ask additional important questions – what type of programs for fitness are they offering specific to your diagnosis? Are they informed about your type of need? Are they up on the current research and wellness initiatives?

 Q: Who assesses if you are a good fit for a facility?

A: The choice of living situation will be determined by the level of care that you need. Each facility will have a wellness assessment that your doctor will need to perform to help the facility establish if you are a good fit for the level of care that they provide.

Your doctor typically needs to attest that you are “chronic and stable”. If you are in this category, and you qualify for an assisted living facility but then worsen and need more care, it is usually less expensive to pay for additional help in an assisted living facility than to move to a nursing home.

Q: How do you pay for the facility?

A: The three ways to pay for a facility are the same three ways to pay for an aide: independent wealth, long term care insurance, or Medicaid.

The average length of stay at an assisted living facility is 2.5 years or 30 months. The average cost of an assisted living facility is between $3,000-$9,000 a month, depending on location within the US and amenities that the facility provides. So, on average, a person would need $90,000-$270,000 of savings to pay for an average length of stay in an assisted living facility. For those of means, this may be doable.

Otherwise, if you have long term care insurance, that would be a way to cover these expenses.

Once nursing home care is needed, this is much more expensive than assisted living – about $15,000 a month. As mentioned above, if someone already lives in an assisted living facility and as they age, require more care, it is usually more affordable to hire extra help from the assisted living facility, than to move them to a nursing home. For some care needs however, such as frequent suctioning or tube feeding, a person will not be able to stay at an assisted living facility and will need to move to a nursing home.

Medicare unfortunately does not pay towards assisted living or nursing home care. Medicaid pays for nursing home care (but not assisted living) but be aware that not all nursing homes take Medicaid. As mentioned above, many people who must pay for care, will need to spend down their personal savings to become eligible for Medicaid.

Tips and Takeaways

• Predicting level of disability as PD advances is difficult, since progression is very variable from person to person
• Despite this, people with PD and families want guidance on how to plan for the future.
• Referrals for home health aide agencies can come from APDA, a person’s physician, AARP or other agencies
• Moving to a better-suited family home may prevent or delay the need to move to a facility later on
• Independent living, assisted living and nursing home are all potential options if one needs to move out of their family home
• Seek the advice of an elder lawyer for options of how to pay for a home health aide, assisted living or nursing facility
• Check out the rest of APDA’s Planning for the What-Ifs series to learn more about advanced PD.