Get informed: The Alzheimer’s Association is the primary organization offering education, support and referrals to Alzheimer’s sufferers and their caregivers. You can learn more about the illness and get help at www.alz.org/altn or its 24-hour helpline at 1-800-272-3900. The National Institute on Aging is an excellent resource to learn about the disease and keep up with the latest scientific developments. Its website is www.nia.nih.gov
For caregivers and family members, Abe’s Garden offers educational videos on its website, www.abesgarden.org. The site also has a free, downloadable 60- page consumer guide for family members faced with choosing a residential home for a loved one. Called “How to Evaluate the Quality of Residential Care for Persons with Dementia,” the guide was funded by the Pat Summitt Foundation and written by scholars associated with Vanderbilt University School of Medicine’s Center for Quality Aging.
Kim Campbell, widow of Glen Campbell, has launched a supportive website called CareLiving for those caring for a loved one with Alzheimer’s (www.careliving.org.) The family participated in a moving documentary film “I’ll Be Me” about Campbell’s struggle with the disease. It is available on Netflix.
Know your risk: The vast majority of people with Alzheimer’s develop it after age 65, but a small minority are afflicted with early-onset Alzheimer’s and can start showing signs as early as their 30s. If Alzheimer’s runs in your family and you believe your genetic risk is higher, you can be tested for a genetic variant that increases the risk of developing Alzheimer’s. Information on genetic testing is available at www.alz.org
Have a plan B: Health care costs for dementia are far more than any other health condition, including heart disease and cancer. Debra King of Takacs McGinnis Elder Care Law, strongly encourages adults to begin planning early for their health care needs, whether that includes dementia care or not.
That includes designating a trusted person to act as power of attorney and health care power of attorney, assessing one’s financial readiness to pay for health care assistance, and saving for the cost of care. Home health aides cost about $20 per hour; residential care can cost anywhere from $4,000 to $8,000 per month. Medicare does not pay for Alzheimer’s care and (TennCare) Medicaid qualifications are strict.
Join a clinical trial: Volunteers are urgently needed for clinical trials to test new treatments for Alzheimer’s and its symptoms. Healthy people with no dementia can participate in the vitally important safety phase of clinical testing, where researchers watch for side effects of possible new treatments (volunteers are under strict medical supervision.)
Clinical trials for new drugs are generally organized through large research-oriented medical centers, such as UT-Knoxville’s Pat Summitt Clinic and Vanderbilt University Medical Center.
Advocate: Alzheimer’s disease gets significantly less funding than other diseases that have a lower mortality rate. Ask your state and national legislators to increase funding for research into Alzheimer’s disease, and to streamline FDA approval of new treatments.