Dementia affects more than six million Americans and that number is expected to grow significantly as our population ages. This is a dreaded diagnosis for individuals and their families. It takes an emotional, physical and financial toll on everyone involved. Experts are working hard to understand the disease and develop new treatments. While there is no “cure,” they are hopeful that some new medications will be able to stop or slow down the progression of the disease.
What Is Dementia
Dementia is a general term that describes a group of neurological issues that affect cognitive abilities including memory, thinking and problem-solving skills. Early dementia indicates identification of the disease in individuals younger than 65. Alzheimer’s disease is the most common type of dementia characterized by abnormal protein deposits in the brain, known as amyloid plaques and tau tangles.
Symptoms of Alzheimer’s
Early signs of Alzheimer’s are often mistaken for typical aging, such as forgetfulness, memory lapses or trouble recalling a word. These all become more common as we age. However, with early onset dementia, the signs are a little more obvious because the individual has not yet reached an age where these changes are expected. Here are some signs that may signal something more serious.
- Memory lapses – frequent lapses, such as forgetting what day or month it is, or where they are
- Forgetfulness – struggling to recall recent events even after frequent reminders, misplacing items in unusual places
- Trouble recalling information – repeatedly asking the same questions and needing frequent reminders for familiar information
- Struggling to complete familiar tasks or follow instructions.
- Difficulty finding words and following conversations. Stories become mixed up and confused, often blending real memories with things seen or heard elsewhere.
Testing for a Diagnosis
When there are signs of early onset Alzheimer’s, an early diagnosis is critical to manage the condition and improve quality of life. Testing can include blood tests, cognitive and neurological tests and brain imaging. A neurologist will interpret the results and determine the diagnosis as well as a plan of treatment. For some, the tests may identify that the dementia-like symptoms are something else altogether, such as depression, infection, side effects from medication or a vitamin B12 deficiency. For others, their worst fears will be confirmed.
Treatment Options
There are multiple drugs on the market used to manage the symptoms of cognitive decline related to memory, reasoning and language. These drugs work to alter specific chemicals in the brain that contribute to Alzheimer’s symptoms. Common drug brand names include Aricept, Razadyne, Zunveyl, Exelon, Namzaric and Namenda. These medications are given as pills. Side effects are generally mild, but as with any medication, some people can experience more serious side effects.
Two newer drugs, Leqembi and Kisunla have recently been approved for those with early symptoms of Alzheimer’s who are experiencing mild cognitive decline. These monoclonal antibody drugs target and remove amyloid protein buildup in the brain, slowing the progression of the disease. There is a lot to understand about these drugs and their effectiveness.
- The drugs can only be administered by healthcare providers enrolled in a special program called Coverage with Evidence Development. This is a national registry that tracks individual patients and the drugs effectiveness.
- Patient’s considering these drugs must have a PET scan that shows the presence of amyloid plaque to qualify.
- The treatment program can be arduous for some patients requiring intravenous injections every month over a 12- to 18-month period. It also requires frequent brain MRIs to check for serious side effects, such as brain swelling and brain bleeds. The drugs are not appropriate for everyone.
- These drugs cannot reverse or repair damage to the brain that has already occurred. The benefit of the drugs is considered modest. They slow the advancement of the disease but eventually patients will continue to worsen.
- The drugs are very expensive. Leqembi comes at a cost of $26,000 per year, and Kisunla $32,000 a year. While Medicare covers both drugs under Part B (deductibles and copays apply), those with early onset Alzheimer’s are not yet 65 years of age and are more likely to be covered under an employer’s commercial health insurance. Most private health insurers have chosen not to cover these drugs; however, decisions to deny coverage can be appealed. The insurance company should provide details of the appeals process and the timelines. There are multiple levels of appeals, which can be a time consuming and frustrating process, but occasionally denials are overturned.
The drug manufacturers for Leqembi (Eisai) and Kisunla (Eli Lily) offer some financial support programs for those who qualify. Both companies have patient support navigators to assist with understanding insurance coverage and identifying financial support programs for eligible patients.
Weighing Treatment Options
It’s important that healthcare providers work closely with the patient and their family to determine the best course of treatment, weighing the pros and cons of specific treatment options. It is not always easy to decide on which path to take. If the drugs are not covered by insurance and the appeals process has been exhausted, it may be financially impossible to afford the more expensive drugs.
Other Aspects to Consider
There are many other aspects to consider, such as whether the individual can continue to work, which can impact insurance coverage and income. Wills, health care proxies, powers of attorney and other legal documents may need to updated. It’s important to consult legal and financial professionals while the individual is considered competent. They must have the capacity to understand the nature and consequences of the documents they are signing.
You Are Not Alone
Receiving a dementia diagnosis can be devastating, and even more so when it is received at a younger age. There may be support groups in your local area geared toward this specific diagnosis.
Organizations like the Alzheimer’s Association offer many resources to support patients and families. Programs are available online or in person at a local chapter. It is helpful to explore what is available in your community early in the diagnosis so when the time comes you know where to reach out for help.
