A diagnosis of Alzheimer’s disease or other forms of dementia can be devastating for patients and their families. Luckily, there’s no shortage of information on every facet of the condition. Here are some of the most reliable websites that provide guidance for patients and caregivers.
1. Alzheimer’s Association (alz.org): This comprehensive site provides information on warning signs, stages of the disease, treatments, care options and financial planning. ALZConnected offers chat rooms for those diagnosed with the disease and for caregivers. You also can find local support groups for caregivers and individuals with younger-onset and early stage Alzheimer’s. Check the community resource finder for information on local services. With its caregiver center, you can enter information about an individual’s medical condition and needs, and a personalized printout will offer recommendations about care options.
2. Alzheimer’s Disease Education and Referral Center (nia.nih.gov/alzheimers): The National Institute on Aging’s center provides information on the latest studies on causes and possible cures. You can search its database for publications, research centers and clinical trials. This extensive consumer-friendly site offers science-based advice on nutrition, exercise, treatment and prevention.
You can download or order a free copy of NIA’s excellent 104-page “Caring for a Person With Alzheimer’s Disease.” Also check the National Institutes of Health’s Senior Health section on Alzheimer’s (www.nihseniorhealth.gov).
3. WebMD (webmd.com/ alzheimers/guide/financial-planning): In addition to the site’s wealth of medical advice about Alzheimer’s and dementia, WebMD offers a guide on Alzheimer’s disease and financial planning. The guide provides basic information about options for paying for long- term care, including health and disability insurance, Medicare and Medicaid.
4. PBS (pbs.org/theforgetting): “The Forgetting: A Portrait of Alzheimer’s” is a 90-minute Emmy Award-winning documentary that follows the stories of several patients and their families. It also weaves in the biology of the disease and the attempts to find a cure. The website provides links to other videos as well as information on coping with a diagnosis and treatments.
5. ThisCaringHome.org: Click on a room in a virtual house, and you will read about safety recommendations. Sponsored by Weill Cornell Medical College, the site also lists room-by-room solutions for dozens of common problems, from forgetting to close a refrigerator door to toileting issues. The site has reviewed numerous products, such as faucet devices that prevent scalding, memory aids and automatic stove-top fire extinguishers. (Read Technology Helps Seniors Stay at Home to learn more about such products.)
6. Lotsa Helping Hands (www.nfca.lotsahelping hands.com): This service offered by the National Family Caregivers Association provides a caregiving calendar for friends and relatives. A coordinator sets up a Web-based community of volunteers who sign up for posted assignments, from shopping to respite care.
7. Caregiving organizations: Several groups provide special advice to caregivers of individuals with chronic conditions. You can find support groups and chat rooms where you can share your concerns and solutions with other caregivers. Top groups include National Family Caregivers Association (nfcacares.org), Family Caregiver Alliance (caregiver.org), and National Alliance for Caregiving (www.caregiving.org).
8. Fisher Center for Alzheimer’s Research Foundation (www.alzinfo.org): This wide-ranging site provides information on the latest research, treatments and exercises to keep mentally fit. The “Ask the Expert” feature enables you to submit questions to researchers. With its resource locator, you can find nearby medical suppliers, physical therapists, geriatric physicians, elder law attorneys and other resources.
9. The Hartford (thehartford.com/mature-market- excellence/dementia-driving): The insurer provides information on the impact of dementia on driving safety. It offers tips on evaluating one’s driving skills, information on safety technologies and pointers to family members on how to persuade those with impairments to stop driving.
10. National Academy of Elder Law Attorneys (www.naela.org): NAELA is a nonprofit membership organization for attorneys who specialize in all aspects of elder law, including estate planning and financial planning for Alzheimer’s. The site has a “Find an Attorney” tool that can be used to locate elder law lawyers in your area. Searches can be refined to identify attorneys with specializations such as special needs trusts, long-term-care planning, or disability applications and appeals.