Live-in care in a group facility. Residential care becomes an option to be considered or a necessity when the person who has Parkinson’s disease can no longer live independently or becomes debilitated beyond the capability of family members to manage. Because care must include medical attention such as medications, most often residential care involves an ASSISTED LIVING FACILITY or a LONG-TERM CARE facility where there are qualified medical staff on duty 24 hours a day.
Some facilities feature progressive services, in which the facility adjusts the level of care and the corresponding cost as the needs of the person with Parkinson’s become more extensive. Often these are complexes on a single campus with separate facilities for independent living which can range from “senior apartments” with no care services to minimal care services (perhaps food preparation, housekeeping, and transportation services), assisted living (mostly independent with moderate care needs), and living in a nursing facility (fully dependent with extensive care needs). Small, often family-run group homes are at the other end of the spectrum. Some people prefer their more homelike setting; it is crucial to make sure such a home has properly trained and credentialed staff. There are also residential care facilities that specialize in neu-rodEgEnErativE disorders such as Parkinson’s disease, huntington’s disease, amyotrophic lateral sclerosis (ALS), and multiple sclerosis. As about one in four people with Parkinson’s disease also has dementia, it is often worthwhile to determine what services the facility offers to meet the unique needs of people who have both physical and cognitive deterioration.
The determination that residential care is necessary can be difficult for family members when there has been little discussion of the possibility before the need becomes apparent. Because many people with Parkinson’s enjoy a relatively normal life, as anti-parkinson’s medications keep their symptoms in control for many years and even decades, they and their families can be lulled into complacency about the disease’s inevitable progression. This decline is as unpredictable as it is progressive and can proceed gradually over time or take a sudden and dramatic turn for the worse. The latter in particular catches families unprepared.
It is good for loved ones and the person with Parkinson’s to discuss the possibility of residential care and their preferences and to agree on the criteria that will establish the need for such care, for example, when the person is unable to bathe and dress unassisted or can no longer walk. There are no set criteria for families; determining factors are unique to each person’s circumstances. Certain kinds of care facilities do have admission criteria that often use scoring systems such as the hoehn
AND YAHR STAGE SCALE, THE UNIFIED PARKINSON’S DISEASE rating scale (UPDRS), or a basic activities of daily living (ADLs) assessment. If medicaid will be necessary to cover the expenses of the residential living facility, matters such as eligibility and spend down that must be considered long before the need arises, as well as potential residential care options that are Medicaid-approved. medicare does not pay for residential care unless it is medically necessary (usually requiring a preceding acute hospital-ization of several days), is of limited duration (there is no coverage for care beyond 100 days), and falls within the criteria for skilled nursing facility (SNF) services.