Focus of current treatments on managing symptoms, but not  curing the disease

Despite decades of research and development, there is still no cure for Alzheimer’s disease. Currently, the only treatments available are medications that can help to manage some of the symptoms and slow down the progression of the disease. 

Patients and families affected by Alzheimer's desperately seek reliable information around all treatments options available to them. Acetylcholinesterase inhibitors, Memantine combined with ACTH inhibitors, and medications to help manage secondary symptoms such as depression, mood, and sleep issues are the main treatments currently available. The cost factors associated with these treatments and the risks and side effects of them are also taken into consideration.

No real advancement towards more effective treatments or even a cure has led to frustration amongst those dealing with this condition. They hope for a drug one day that will dramatically improve or even cure the disease.

Missing early symptoms and difficulty accepting diagnosis 

Online discourse indicates that early symptoms of Alzheimer’s are quite subtle and easy to miss. Early symptoms, if noticed, are typically attributed to circumstantial reasons such as age, secondary symptoms of others diseases like UTI, and even a patient’s tendency to mask symptoms of memory loss.

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As a result, a lot of time lost between the first signs and a firm clinical diagnosis. Many patients and their caregivers believe that the time lost could have been beneficial in slowing the progression of the disease.

Once diagnosed, most patients have difficulty accepting or acknowledging the fact that they have Alzheimer’s. Struggling to come to terms with it, their emotions range from shame and embarrassment to fear around the possibility of having to leave their families and move into care homes.

Activities & occupational therapies to keep patients calm and engaged

There is a lot of positive discourse around activities and occupational therapies that are proving to be beneficial in managing behavioral issues associated with Alzheimer’s such as anxiety, violence, stress, fear etc.

The most popular ones mentioned in online discourse include the use of therapy pets and dolls, cognitive stimulations through puzzles, games and brain exercises, music therapy, creative therapies such as drawing and painting, virtual distraction therapies such as watching videos of cats, birds, puppies or going through family photos etc.

Many caregivers believe that engaging in these therapies have have had a positive effect on patients from making them feel calm, relaxed, engaged and triggering positive memories to slowing down cognitive decline and memory loss. 

Doubts and controversies surrounding new and emerging treatments 

The introduction of new and emerging treatments for Alzheimer's has recently sparked both excitement and controversies. While some see hope in these treatments that focus on addressing the underlying cause and not just the symptoms, there is also skepticism as to whether these treatments will be effective. 

Recently, Biogen's new Alzheimer's drug, Aduhelm, was approved by the FDA despite its failure to significantly reduce AD symptoms in clinical trials. Adding to the doubts surrounding the effectiveness of this treatment are its unpleasant side effects, and incredibly high price tag that is potentially not covered under Medicare.

As such, lack of confidence among physicians, patients and their family member in the efficacy of such new treatments along with perceptions of focus on profits rather than the patients’ well-being has been a major barrier in the advancement and adoption of such emerging treatments. 

Struggles of primary caregivers within the family

An Alzheimer’s diagnosis has a ripple effect that significantly impacts the entire family and is particularly challenging for primary caregivers within the family. Online discourse indicates that these caregivers are struggling with balancing care for the patient and themselves, dealing with the patient’s change in behavior while managing their own physical and emotional needs.

Many have voices how it’s challenging for them to find the time and energy to provide the necessary care while having to cope with feelings of guilt, frustration, and sadness. They often also have to make difficult decisions about the patient's care and treatment as well as navigate the financial and legal aspects of caregiving. Many are often riddled with questions such as ‘when is the right time for memory care facility’ and consequently, ‘how to break the news’. 

It is a difficult and often lonely journey, with many caregivers reaching out to online and offline support groups to find and access resources to help them with caregiving.

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Possibility of genetic inheritance is a cause of fear and need for preparedness 

The general perception among people is that Alzheimer’s can be genetically inherited, specially if there has been a substantial history of Alzheimer’s in the family. This drives fear and concern among those who believe that they may be genetically predisposed to the disease.

Fearing the disease, these individuals feel the need to prepared and learn more about the disease, the early symptoms and its risk factors. Many even consider genetic testing to know if they have the gene mutation for Alzheimer’s so that they are aware and prepared at an early age.

Many are even quick to consider the use of supplements like magnesium threonate while actively searching for resources and information on strategies to prevent or delay the onset of symptoms as much as possible.

Alternative treatments and approaches for prevention and slowing cognitive decline

With no real cure for Alzheimer’s, many caregivers are constantly on the lookout for alternative treatments and approaches to slow cognitive decline.
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Many show interest towards natural supplements like ‘Lions mane’, a medicinal mushroom that has anecdotally proved to be beneficial in improving brain function and memory. A lot of online discourse also focuses on the use of cannabis to keep patients calm and avoid episodes of erratic and violent behaviors. Many also believe that lifestyle changes such as following specific diets like Mediterranean, Ketogenic or MIND diets and exercise can help in slowing disease progression. 

These alternative treatments are usually over and above the current treatment plant prescribed by the doctor. However, there are many who also question the safety and efficacy of such alternative treatments in the absence of enough proven research.

Complexities of high cost of treatment, insurance and access to medical care  

The financial burden of care and treatment for Alzheimer's falls heavy on the patient and their families. Many treatments for Alzheimer’s can be prohibitively expensive, if not covered under insurance. At the same time pharmaceutical companies frequently drive up prices, either making drugs harder to obtain or driving up medicare premiums in order to access them. New treatments can also seem out of reach with eligibility criteria and coverage under insurance varying greatly. For instance, recent online discourse sheds light on how CMS has blocked access to Lecanemab, an expensive FDA approved treatment that could prove beneficial in treating Alzheimer’s. Additionally, in the long term, costs associated with care facilities and caretakers also tend to pile up, further adding to the burden.

All of these factors combine to create a complex and expensive landscape for patients and their families dealing with Alzheimer's. As a result, they have to have to make tough decisions of whether to prioritize diagnosis and treatment or focus on the long term financial and practical considerations