It was only when her family began seeing a counselor that things began turning around. The counselor supported the family’s belief that a physical problem existed and put them in touch with an out-of-town family practitioner who, after one visit, was able to diagnose some type of dementia and used his connections to obtain an appointment with the director of the Alzheimer’s/Memory Unit at Duke where numerous tests and brain scans clearly indicated Alzheimer’s.
I write to beg all of you to take care when persons under 65 demonstrate unexplained symptoms. This is critical for women when, all too often, physicians still explain everything away as anxiety or mental disorders.
Please take time to become fully informed about recent developments that relate to dementias, particularly early onset Alzheimer’s: how to diagnose, what the symptoms are, what is available in the region that offers assistance to families, and what you need to do to support the patient and family.
In our case, it took over two years for a proper diagnosis to be made. Unfortunately, this is not uncommon. Often it takes one to five years for a proper diagnosis to be made for early onset Alzheimer’s, by which time people have lost their jobs or business and are no longer insured, adding to the trauma of the disease.
Recent findings of a national study on early onset dementia indicate that:
• Health care providers generally don’t look for the disease in younger patients and it can therefore be months or years before the right diagnosis is made and proper treatment can begin.
• Those who leave their jobs before diagnosis may be denied employer assistance that would otherwise be provided to individuals with disabilities.
• Many who have early onset Alzheimer’s and other dementias do not apply for government disability payments under Social Security Disability Insurance. They are unaware that a person with dementia has a qualifying disability.
• Most programs available for those who are over 65 are not available to those diagnosed with early onset Alzheimer’s.
• Existing medical care and community service programs for the elderly may not be appropriate for early onset individuals.
• Family members and other care partners often lack the information and support they need to provide care to their loved ones. It is often a long process searching for help. This is where medical providers can be of help.
• Research is desperately needed on early-onset dementias.
• The two-year waiting period for Medicare coverage of those under age 65 who qualify for SSDI needs to be eliminated.
•Services for the Aging need to be expanded to accommodate under-age 65 individuals with early onset Alzheimer’s and other dementias.
I ask that you help in the following ways:
1) Be open to the idea and knowledgeable about the symptoms of early onset dementias.
2) Be educated about resources in our region and the state. In my research, I have found the following services to be the most helpful: Mountain Area Office of the Alzheimer’s Association (www.alz.org); and Cindy Miles at the Family Caregiver Support Program (828.586.1962).
4) Provide an up-to-date supply of print materials in your offices.