In these early stages, you may not be in dire need of outside support. But you should be aware that there are numerous services available to help you, when the time does come. Among them:
Alzheimer’s Association
For anyone who has been diagnosed with Alzheimer’s, tapping into the Alzheimer’s Association is a must. The association was formed in 1979, when five family support groups got together to discuss the possibility of forming a national organization. A year later, twenty chapters had been formed. Today, the organization is involved in every facet of the disease, including advocacy, education, and research into the prevention and treatment of Alzheimer’s Disease and the quest for a cure. In all, there are now eighty-one chapters and 300 local points of service. The organization hosts an annual Memory Walk in 680 communities across the country.
For people living with the disease, the Alzheimer’s Association offers a Contact Center Helpline that operates around the clock. The center provides information, guidance, and support on everything from understanding memory loss to making legal decisions. It also offers referrals to local programs and services and provides assistance with crises. The number is 1-800-272-3900.
In addition, the Alzheimer’s Association provides education services, library services, and safely services. To find them on the Internet, go to www.alz.org. Some local chapters also offer services and support that specifically target people with Alzheimer’s in the early stages.
National Family Caregiver Support Program
In 2000, the U.S. government passed the Older Americans Act Amendments and established an important new program called the National Family Caregiver Support Program (NFCSP). The program was developed by the Administration on Aging (AoA) of the U.S. Department of Health and Human Services (HHS). The AoA works with a network of national, state, and local groups to provide five basic services for those involved in caregiving:
• Information about available services.
• Assistance in obtaining access to support services.
• Individual counseling, organization of support groups, and caregiver training to help them make decisions and solve problems.
• Respite care for the temporary relief of caregiving duties.
• Supplemental services, on a limited basis, to complement the care provided by caregivers.
The program is eligible to family caregivers who are caring for adults aged 60 and up. In addition, it is available to grandparents and relative caregivers of children under 18 years of age and those affected by mental retardation and developmental disabilities.
Eldercare Locator
Since 1991, the AOA has operated a service called the Eldercare Locator, a national toll-free service that helps connect older adults and their caregivers with local services for seniors. The service is also available online. Eldercare Locator can help you identify services in your area that can assist you with Alzheimer’s care.
The toll-free Eldercare Locator service operates Monday through Friday, 9:00 a.m. to 8:00 p.m., Eastern time, and can be reached at 1-800-677-1116. On the Internet, the Web site is located at www.eldercare.gov.
Faith in Action
On a more local level, the Robert Wood Johnson Foundation has an interfaith volunteer caregiving initiative called Faith in Action. The program brings together volunteers from many faiths to work together to care for members of the community who have long-term health needs, such as Alzheimer’s. The volunteers come from churches, synagogues, mosques, and other houses of worship, as well as the community at large. Volunteers provide a variety of non-medical assistance with tasks such as picking up groceries, running errands, driving patients to the doctor, friendly visiting, reading, and helping to pay bills.
No one can tell you the exact kind of help and support you need as you begin to live with Alzheimer’s. And certainly, no one can predict the kind of assistance you will need in the future as the disease progresses. But knowing that there are services available to you can be a tremendous relief. The key is knowing when to tap into those resources and how to make them work for you.