A measure calling for expanded information gathering in order to further study Alzheimer’s disease and the caregivers of persons who have the disease remains on Governor Mark Sanford’s desk. The bill sponsored by Cherokee County Senator Harvey Peeler and Dorchester County Senator Michael Rose calls for the expansion of data collected by the Alzheimer’s Disease Registry.
The registry was established 20 years ago to track the number of cases of Alzheimer’s and dementia in the state. Alzheimer’s Association of South Carolina spokeswoman Beth Sulkowski says the information gathered would help the state develop better public policy as well as services that are geared toward helping people with the disease and their caregivers. Sulkowski says learning about the lifestyle of the sufferer could lead to finding out more about the root causes of the disease. Sulkowski says information on caregivers is just as important.
“Many times a caregiver’s health will decline quicker than the person with Alzheimer’s or dementia due to the stress. We’re interested in finding out what a caregiver’s experience is like and do we need more support services in the state for those individuals.”
In 2000, the number of South Carolinians with Alzheimer’s or a related disorder was 67,000. That number is expected to rise to 80,000 next year. Sulkowski says the numbers are thought to be larger because many families in the state are taking care of persons with various types of dementia that have not been formally diagnosed, because many persons think their loved ones conditions are a natural part of aging. Sulkowski says Alzheimer’s is not a natural part of aging.
Sulkowski says enhanced public policy for persons with Alzheimer’s and their caregivers is essential from a humanitarian and economic standpoint. Sulkowski says about 70 percent of caregivers of Alzheimer’s patients in the state are family members and each adult caregiver providing , in many cases, round the clock care is an adult removed from the state’s workforce.
“This not only affects the economy, but it also affects that caregiver because when they step out of that employment in order to become a caregiver, most of them will lose their own health insurance. It’s really a ripple affect. Alzheimer’s doesn’t just affect one person, it really changes day to day life entirely for a whole family.”
Sulkowski says a grant from the Department of Mental Health provides funds that help caregivers take a break from the 24 hour responsibility of caring for an Alzheimer’s patient. Caregivers can use a voucher of up to $500 for an in-home care provider, access an adult day care center, or a short term stay in a residential facility.
Sulkowski says age and heredity are important components in the study of the on set of Alzheimer’s, however lifestyle is also important. Sulkowski says the health of a person’s brain is often tied to the health of a person’s heart. “We do recommend staying physically active and mentally active. Continue learning new things, read, do crossword puzzles and so on. Also stay socially active because isolation tends to hasten the rate in which cognitive health declines.”
Sulkowski says in order to better serve people with Alzheimer’s and their caregivers, researchers need to get more information on the forms of treatment these patients are getting including what medications they may be taking to slow the progression of the disease.
Sulkowski says the community long term programs through Medicaid are often seen throughout the state. That program allows for in-home care providers to come into the home and assist with that level of care. Sulkowski adds that Medicaid is also the only program that covers the cost of long term care in a facility in a skilled nursing setting. Sulkowski says more help is needed in the area of assisted living care.
“Right now there really isn’t any help for the cost of assisted living care. We have to take a closer look at that and other things moving forward in the future because there is a really great for those levels of care.”
Sulkowski says unfortunately many families have not planned their budgets in order to pay for assisted living care. Sulkowski says we are moving to a point where people are gaining information on their long term care options including private long term care insurance.