Alzheimer’s Diagnosis is Rarely Disclosed to Patients

Q. My mother, Lorraine , is in the advanced stages of Alzheimer’s. We think it began ten years ago when she started showing signs, but no one knows for sure. She went to a doctor for physicals every year, and seemed to be in good health, except she had what we thought were “senior moments.” When her forgetfulness began occurring more and more often, we started assuming she had some sort of dementia, and it turns out we were right. We just wish the doctor would have told us, so maybe she could have planned better and participated in trials for medications. Is it common that doctors don’t tell their patients of an Alzheimer’s diagnosis? Why would they do that? Also, with my mother already being in a nursing home, her assets are being wiped out quickly. Is it too late to plan for Medicaid Asset Protection? 

A. The Alzheimer’s Association’s 2015 Alzheimer’s Disease Facts and Figures report, released last month, found that only 45% of people with Alzheimer’s disease had been told of their diagnosis in the early stages. That means that 55% of those surveyed were not informed until the disease was more advanced. In contrast, more than 90% of those with the most common types of cancer (breast, colorectal, lung and prostate cancer) were told of their diagnosis as soon as it was discovered.
The study conducted by the Alzheimer’s Association investigated the lack of a prompt diagnosis after hearing many stories of people not being told of their disease until it had progressed significantly. To conduct the study, researchers analyzed Medicare claims data from 2008-2010 to find how many people had been treated for Alzheimer’s in that time period. They then compared the data to patient responses in the Medicare Current Beneficiary Survey, in which patients were asked, “Has a doctor ever told you that you had Alzheimer’s disease?” The results were shocking!
According to the Alzheimer’s Association, many doctors fail to give an Alzheimer’s diagnosis (and presumably fail to give a diagnosis of any other type of dementia) because they do not want to cause emotional distress. Other commonly cited reasons for not disclosing a diagnosis included a lack of support services, not enough time to discuss treatment options, and the stigma that still surrounds the disease.
While many doctors may be trying to protect their patients from the devastating diagnosis, their non-disclosure is more harmful than good. Why?
• Learning the diagnosis later in the course of a progressive brain disease may mean the person’s capacity to participate in decision making about care plans, or legal and financial issues, may be diminished, and their ability to participate in research or fulfill lifelong plans may be limited.
• People have the right to know and understand their dementia diagnosis.
• Patients who know their dementia diagnosis have better access to quality medical care and support services.
• Knowing the diagnosis early enables the person with Alzheimer’s or another form of dementia to get the maximum benefit from available treatments, and may also increase chances of participating in clinical drug trials that help advance research.
• Additional studies that have explored this issue have found that few patients become depressed or have other long-term emotional problems because of the dementia diagnosis.
Hopefully the results of the report will compel more medical professionals to disclose an Alzheimer’s or other dementia diagnosis to patients in the early stages, in a sensitive and supportive manner, so they can take care of themselves physically and emotionally, and plan for long-term care.
The full text of the Alzheimer’s Association 2015 Alzheimer’s Disease Facts and Figures report can be viewed at alz.org/facts. The report also appears in the March 2015 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 11, issue 3), at alzheimersanddementia.com.
Were you told that you or a loved one has Alzheimer’s?
Effective coping strategies can help individuals and caregivers foster good physical, mental and emotional health after a dementia diagnosis. Below are some tips to help those who have been diagnosed with Alzheimer’s or any other type of dementia:
• Come to terms with your diagnosis and the emotions you are feeling by keeping a journal, sharing your feelings with family and friends, seeking help from a support group or counselor, and taking the time you need to grieve, feel sad, or angry.
• Take care of yourself. A healthy lifestyle with good nutrition, physical exercise, and plenty of rest can help you live well for a long time, even with an dementia diagnosis.
• Maintain a healthy lifestyle with good nutrition, physical exercise, and plenty of rest. This can help you live well for a long time, even with a dementia diagnosis.
• Find solace through friends and family, a spiritual community, church or synagogue, or by being in nature or by engaging in calming activities such as prayer, yoga, or meditation.
• Know you are not alone. Turn to family members, friends, and loved ones for emotional support.
• Learn to accept help to get through difficult times, even if it feels like a loss of independence, says the Alzheimer’s Association: “While it may seem like a sign of weakness at first, asking for help when you need it may help you maintain your independence and remain in control.”
Medicaid Planning for Alzheimer’s and Other Types of Dementia
A diagnosis of dementia is life-changing for both diagnosed individuals and those close to them.  Generally, the earlier someone with dementia plans for long-term care needs, the better.  But it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning.
Medicaid planning can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if you are already in a nursing home or receiving other long-term care.
Medicaid Asset Protection
People with Alzheimer’s live on average four to eight years after they’re diagnosed, but some may live 20 years beyond their initial diagnosis. Do you have a loved one who is suffering from Alzheimer’s or any other type of dementia? Persons with dementia and their families face special legal and financial needs. At The Law Firm of Evan H. Farr, P.C., we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones.  We help protect the family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. Please call us as soon as possible to make an appointment for a no-cost consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

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