Most people believe that the best long-term care plan is one that allows their loved ones to be taken care of at home for as long as possible. There are many ways to make this possible, but the reality is that many people with incurable brain illnesses will eventually need more care than can reasonably be provided at home. Start researching and developing a plan for this transition early so that you are prepared in the event that you must make a sudden decision.
The first step for most people is to learn what kinds of care are covered by their health insurance, Medicare and Medicaid. Military veterans and their spouses may also be able to get help through Veteran's Affairs programs. Families can then plan to supplement that coverage with their own funds if that's possible.
Long-term care insurance is an option for some families. Speak with an insurance agent and compare costs and benefits before making a decision.
For most people, the first stage of long-term care is care at home. Family and friends are often the first caregivers. Depending on the patient's needs, a nurse, social worker, driver or physical therapist might also need to visit the home regularly.
Investigate the PACE program (Program of All-Inclusive Care for the Elderly), available through both Medicare and Medicaid, to find out what services are available in your community for in-home care. (See "For More Information" below.)
For adults who work and also take care of an aging parent, adult daycare can be a good choice. Look for a facility that is staffed with medical professionals, nurses, dietitians and activity coordinators who have experience with your loved one's condition. Visit several times before making a selection.
Residential Care and Nursing Homes
Make a list of facilities in your area and take time to visit them. There are several different types of residential care facilities, ranging from those that provide residents with their own apartment and a lot of autonomy to facilities that provide 24-hour nursing care. Two types of care facilities have become more prominent in recent years: assisted living units for those who don't need around-the-clock monitoring and dementia units in nursing homes for those who do.
Make sure the facilities you visit have the services you will need. For example, a person with dementia should be cared for in an environment with staff trained in dementia care and with certain policies, such as wander alert systems, that are necessary for people with dementia. National associations dedicated to the health condition in question can provide information about the specific needs of patients with those conditions.
Hospice care helps people die with dignity and as little pain as possible. Hospice care can make it possible for a person to die at home. This is the end stage of long-term care for many people. Hospice organizations also provide support and grief counseling for family members.
FOR MORE INFORMATION: Get more information on the PACE program.
SOURCES: AARP; National Respite Network and Resource Center; Family Caregiver Alliance
Written by Madeline Roberts Vann, MPH
Reviewed by George T. Grossberg, MD
St. Louis University School of Medicine
Department of Psychiatry
Last updated August 2008