As a family member, you may need to plan for future care in a residential setting that is equipped to provide for a person with a developmental disability who has Alzheimer's disease. However, until that time, many things can be done to provide in-home supports. Many family members and caregivers of an adult with a developmental disability have provided a lifetime of affection, support, and care while watching the individual progress and become more independent. It is particularly difficult for a family member or caregiver to watch his or her relative lose skills associated with the onset of Alzheimer's disease. Therefore, it is very important to obtain services and supports during this difficult time. Certain specific services may be helpful in supporting the care that you are providing:
*Home care services - These include having a homemaker assist in the home or having a nursing aide provide personal care to the adult. It may also include home-delivered meals, friendly visiting, and the services of a senior companion. For the names of agencies that provide home care services in your community, call your local area agency on aging or look in the yellow pages of your telephone directory (generally under "Home Health Services").
*Adult day care - Available in many communities, this program may offer a brief respite from caregiving and an opportunity for the adult to become involved in different day activities. For names and locations of adult day care programs in your community, call your local area agency on aging, your county health department, the local chapter of The Arc or other disability agency, or look in the yellow pages of your telephone directory (generally under "Day Care Centers-Adult" or "Elderly Person Services").
*Overnight or weekend respite - Either in the home or at another setting, respite offers a chance for the caregiver to take a vacation or other short break from caregiving. For names of agencies that provide respite services in your community, call your area agency on aging, the local or state mental retardation agency, local chapter of The Arc or other disability agency, or look in the yellow pages of your telephone directory (generally under "Social and Human Services").
*Hospice - This includes special support services in the home or within a specialized hospice setting during the last six months of life. Hospice services are for persons who are terminally ill as well as for their caregivers. For the name of the hospice in your community, contact your local health department or look in the yellow pages of your telephone directory (generally under "Hospices").
*Financial or legal aid - This includes aid in arranging for payment for care and help in settling legal concerns, such as wills and trusts. For information on how to obtain such aid, consult your local area agency on aging, local chapter of The Arc, or other local disability agency.
*Local support groups - These include counseling or other group supports with persons in a similar situation. For information on how to obtain such aid, consult your local Alzheimer's Association or local area agency on aging.
*Some area agencies on aging or local senior services agencies maintain special caregiver assistance programs. Some of these include special supports for parents with a son or daughter with a developmental disability. These programs can help you obtain specialized in-home services and other supports. To receive more information regarding any of these services, call your local area agency on aging or local chapter of The Arc.
If you are a staff member providing residential or day services for an individual with a developmental disability whom you suspect may be showing symptoms of Alzheimer's Disease, you can turn to your agency for guidance and assistance. You can also call your local area agency on aging, local office of your state mental retardation and developmental disabilities agency, local chapter of The Arc, local Alzheimer's Association, or any local Alzheimer's Disease or dementia assistance program or service for advice.
If you are providing care to an individual with Alzheimer's Disease, you may want to participate in a support or educational group. These groups are for people in similar caregiving situations who meet regularly to share experiences and advice with each other and learn about resources available to them. To find out about support and educational groups and related resources in your area, call your local area agency on aging, mental retardation state agency, local chapter of The Arc or other disability agency, local Alzheimer's Association, or look in the yellow pages of your telephone directory (generally under "Social and Human Services") or in the white pages business listings.
Caring for someone with a developmental disability who may have Alzheimer's Disease can be a long and difficult task. There are many helpful resources that can assist families and other caregivers of people with Alzheimer's Disease. If you need help or just want to learn more about Alzheimer's Disease, contact:
*The Alzheimer's Association. This is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and by providing education and support to people with Alzheimer's disease, their families and caregivers. The Alzheimer's Association has local chapters throughout the United States, plus produces a wide-range of materials on this disease. To locate the nearest local chapter, or to get more information or receive materials, contact the association at 1-800-272-3900. You can also write the Alzheimer's Association at 919 North Michigan Ave., Suite 1000, Chicago, Illinois 60611-1672.
*Your area agency on aging. In some communities, this agency may be called by a different name, such as office or department for senior citizen affairs or senior services. Look for the telephone number in your local telephone directory. Most area agencies on aging also issue a community resource directory which lists many Alzheimer's disease assistance resources.
*Your state office or agency on aging. These are also called state units on aging (SUAs). Contact your SUA and explain your situation and ask for suggestions. Don't forget to ask for the number of your area agency on aging. To contact your state aging agency look in the state government listings of your local telephone directory.
*The Alzheimer's Disease Education and Referral Center (ADEAR). Operated by the National Institute on Aging, the ADEAR can provide some helpful information through its variety of publications. You can write the Center at P.O. Box 8250, Silver Spring, MD 20907-8250 or call 1-800-438-4380.
*The Arc is the country's largest voluntary organization committed to the welfare of all children and adults with mental retardation and their families. The Arc has chapters throughout the United States and provides publications and other useful information. You can write The Arc at 1010 Wayne Avenue, Suite 650, Silver Spring, Maryland 20910. (301) 565-3842. Email: info@thearc.org
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