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Where to Turn in Rhode Island A Resource List for People Affected by Alzheimer's Disease and Related Disorders There are many types of services available to help throughout the course of the disease. Listed below are the types of resources to be found in RI and ways to connect with them. (Updated 12/06) INFORMATION AND SUPPORTAlzheimer's Association - RI Chapter The Rhode Island Chapter helps persons with Alzheimer's disease or related disorders and their families and friends. The Association provides 24/7 help over the phone, meets with individuals and their families to provide support and direction, sponsors support groups for family caregivers, conducts educational workshops and conferences and maintains a comprehensive resource library. The Chapter publishes a quarterly newsletter and advocates on a local and national level for the needs of all persons affected by Alzheimer’s disease and related disorders. On the chapter's web site there is an on-line program called CareFinder which helps users to look at care options and planning. Alzheimer's Association - National Office The National office helps local chapters throughout the country in their provision of service. It provides guidance, educational materials, training and national advocacy. It also maintains a comprehensive resource library. It is the largest non-governmental source of support for research endeavors. It provides no funding to its local chapters, each of which is responsible for raising their own resources through special event fund-raising events and private and public foundations. MEDICAL SERVICES Several different types of doctors are able to be of most help to persons with Alzheimer's disease or related disorders: neurologists, geriatricians, psychiatrists or primary care doctors. The most important element is their experience in treating people with the disease. Also, there are memory loss diagnostic centers that provide comprehensive medical assessments to diagnose and to plan a course of treatment for individuals with memory loss and/or other changes in physical, psychological or social functioning. For a list of diagnostic centers and of physicians, contact the Alzheimer's Association - RI Chapter. LEGAL SERVICES People with Alzheimer's disease and their families will need to address legal and financial issues soon after a diagnosis is made. It is important that an attorney be consulted who has experience in elder law and financial planning. Contact the Alzheimer's Association - RI Chapter for a list of attorneys who are knowledgeable about elder law and financial planning. For further information on elder law, access: www.elderlawanswers.com FINANCIAL ASSISTANCE Caring for someone with Alzheimer’s disease is costly to family caregivers in particular. There are programs available to help with some of the costs – medical and otherwise:
RESPITE CARE – CARE MANAGERSThe Department of Elderly Affairs provides help to caregivers in locating in-home care services; care managers meet with caregivers in their home to help plan and access services. Contact Home and Community Care at 462-0570. There are also private geriatric care managers (usually social workers or nurses) who can help with care planning and coordination. Contact Alzheimer’s Association – RI Chapter for a listing. ACTIVITY PROGRAMS/ ADULT DAY PROGRAMSAdult day programs provide a planned program of social, support and health services in a protected setting during daytime hours. This community-based service is designed to meet the needs of adults with a range of impairments. There are two specialized day programs for individuals with Alzheimer's disease or related disorders that have a low client-to-staff ratio, appropriate activities, and a safe environment. Transportation to and from the program may be available. For a list of programs, contact the Alzheimer's Association - RI Chapter. HOME CARE SERVICES Most people with Alzheimer’s disease or a related disorder are cared for at home by their families during a major part of their illness. In order for care to continue at home for any length of time, however, family caregivers need to take regular breaks away from this responsibility. While friends and relatives may provide some relief, most families turn to outside agencies for assistance with the daily demands of care. Home care services range from medical care to personal care to housekeeping and companionship. Most services are contracted on an hourly basis. For a list of licensed Home Care Agencies, contact the Alzheimer’s Assoc. - RI Chapter. LONG-TERM RESIDENTIAL CAREThis type of care includes assisted living facilities and skilled nursing homes. In general, individuals who can no longer live independently but do not require constant supervision use assisted living facilities. Assisted living facilities with special care units have living arrangements, activities, and levels of supervision necessary for caring for patients with Alzheimer's disease. Skilled nursing facilities provide skilled nursing care for residents who need continued medical or nursing care. Both types of facilities may have specialized Alzheimer's units to meet specific needs of people with Alzheimer's disease. For a list of those facilities with specialized Alzheimer's units, contact the Alzheimer's Association RI Chapter. Access nursing home inspection and survey information at the RI Department of Health's web site: www.health.ri.gov and click on "nursing homes". HOSPICE CARE Hospice care provides a unique blend of services to address the physical, emotional and spiritual needs of terminally ill persons and their families. Hospice programs provide these services to individuals in the later stages of Alzheimer's disease. You can access these services through local hospice organizations and some home care agencies. The Alzheimer's Association-RI Chapter also has a listing. SOMEONE TO TALK TO / SUPPORT GROUPS FOR FAMILY CAREGIVERSThere are caregiver support groups that meet at a variety of locations and times and provide an opportunity for caregivers to discuss issues related to caregiving and to Alzheimer's disease or a related disorder. Trained group leaders assist group members in supporting each other and in exchanging coping skills and information. These groups are free and open to the public. For a list of caregiver support groups, contact the Alzheimer's Association - RI Chapter or look on our web site at www.alz-ri.org SOMEONE TO TALK TO / GUIDANCE AND COUNSELINGThe Alzheimer's Association-RI Chapter has a social worker/care consultant on staff who meets with individuals and families to help them sort through their particular situations and to provide guidance and direction. There is no cost for this service. If more intensive help is needed, the Association can provide referrals to mental health counselors. OTHER PEOPLE WHO CAN HELP / FAMILY AND FRIENDSCaregivers should also consider family and friends for help with the many tasks involved in caregiving. A family member or friend may provide you with a short period of time away from caregiving, may take on some responsibility that could assist you in providing care for your loved one or may be a good listener. They can be invaluable sources of support. THINGS TO READ Koenig-Coste, Joanne (2003) Learning to Speak Alzheimer’s: A Groundbreaking Approach for Everyone Dealing with the Disease. New York: Houghton Mifflin Company. Kuhn, Daniel, MSW. (2003) Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers. CA: Hunter House. Mace, N. L., & Rabins, P. V. (1999). The 36-Hour Day. Third Edition. Baltimore: Johns Hopkins University Press. Peterson, Betsy. (2004) Voices of Alzheimer’s: Courage, Humor, Hope and Love in the Face of Dementia. Cambridge, MA: Perseus Books Group. Snyder, Lisa. (2000). Speaking Our Minds. NY: W.H. Freeman and Co. ADDITIONAL WEBSITES TO BROWSE
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