Can Assisted Living Care for Someone With Parkinson's Disease in California?

The National Institute on Aging describes Parkinson's disease as a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination. Symptoms usually begin gradually and worsen over time, and as the disease progresses people may have difficulty walking and talking. The institute also notes that the symptoms and the rate of progression differ from person to person.

That last point matters when you look at care homes. Two people with the same diagnosis can need very different amounts of help, so a home will ask about what your parent can and cannot do today, not only about the diagnosis. This page does not cover treatment. Questions about medications, therapy or what to expect belong with the neurologist.

Assisted living communities and board and care homes, licensed in California as residential care facilities for the elderly (RCFEs), are non-medical settings. State regulations in Title 22 sort certain health conditions into a restricted list and a prohibited list. Parkinson's disease is on neither. Our guide to health conditions assisted living can accept explains both lists.

What the rules look at is the care the person needs. Title 22, section 87455, lets a home accept people who need help taking their medications and people who get medical care outside the home or from a visiting nurse. It bars anyone who requires 24-hour skilled nursing care. The basic services every licensed home must offer include help with dressing, eating and bathing, regular observation of the resident's condition, and arranging transportation to medical appointments.

Mobility changes which rooms a person may live in. The regulations count a person who depends on a walker or wheelchair as nonambulatory, and a home must hold a fire clearance for nonambulatory residents before it accepts or keeps one. A resident who becomes nonambulatory may not stay in a room approved only for ambulatory residents.

Section 87464 also says a home need not accept any particular person. So two licensed homes can give you different answers about the same parent, and both can be within the rules.

Title 22 separates what a home's own staff may do from tasks that belong to what it calls an appropriately skilled professional: a licensed person such as a registered nurse, licensed vocational nurse or therapist. For care needs that often come up with Parkinson's, the rules are:

The neurologist sets the medication schedule, and families often ask whether a home can keep to it. The Parkinson's Foundation warns that during hospital stays, Parkinson's medications are often delayed, missed or not given on the person's at-home schedule, and that this can set off further complications. That warning is about hospitals, but it is a good reason to ask a care home the same question.

In an RCFE, staff assist with medications the doctor has ordered. Bring the exact times as the doctor wrote them, and ask how the home fits doses that fall outside its usual medication rounds, who gives them at night, and how a late or missed dose is recorded and reported. Our guide to medication management in assisted living covers storage, as-needed medications and who may do what.

The Parkinson's Foundation says swallowing difficulty, called dysphagia, can lead to malnutrition, dehydration and aspiration, and that speech-language pathologists evaluate and treat it. In a care home, the doctor or therapist decides what diet is right, and the home's part is to serve what was ordered and watch for changes. A therapist can visit a resident where they live: see therapy and home health in assisted living. Tube feeding is a different matter, covered in feeding tubes and swallowing problems.

Balance problems can lead to falls. Section 87608 allows postural supports such as braces or soft ties only with a physician's written order. The resident must be able to release them quickly, and they may never tie or limit the use of a resident's hands or feet. Our guide to fall risk in assisted living explains what homes can do instead.

The National Institute on Aging lists mental and behavioral changes and memory difficulties among the changes some people with Parkinson's have. If a doctor diagnoses dementia, California's dementia care rules in Title 22, section 87705, apply to the home as well. Ask whether the home cares for residents with dementia now.

A home must update its appraisal of a resident at least every 12 months and whenever there is a significant change in condition, and it must tell the resident's medical professional and representative about the change. Three lines in the rules matter most in later stages:

• Depending on others for all activities of daily living is a prohibited condition under section 87615.
• A person who is bedridden may stay only in a home with the right fire clearance, except during a temporary illness or recovery from surgery (section 87606).
• No one who requires 24-hour skilled nursing care may be admitted or kept.

If your parent reaches one of these points, a home may ask the Department of Social Services for an exception, or a hospice care plan may cover the condition in a home with a hospice waiver. Otherwise a move to a setting licensed for more care may be needed. Ask each home, before move-in, at what point it would say it can no longer meet your parent's needs.

Hamssa Benrekia is a senior living placement specialist in Torrance with a background in hospice, palliative care and home health. She can talk through your parent's care needs, point to licensed homes in the South Bay and Harbor area that say they care for people with Parkinson's, including board and care homes, and go on the tours with you. She does not decide what a home may accept: the home, the doctor and the state do. To start, contact Hamssa, or read the California Assisted Living Placement Guide.