WHAT TO DO AFTER RECEIVING AN ALZHEIMER’S DIAGNOSIS

Rafael Babilonia Llamas, Thanatologist

Often, the first to learn about a diagnosis are the patient’s immediate family members. A diagnosis of any critical or terminal illness brings with it a specific type of pain that family members must begin to process, which is known as anticipatory grief. However, in most cases, family members are unaware of what it means, even as they enter the stage of denial that prevents them from coping with a diagnosis.

In practice, we have observed many cases of family members who have faced Alzheimer’s diagnoses with great determination, managing to successfully plan for the future while benefiting the patient and everyone involved in their care.  A common denominator in these cases is the conviction that a diagnosis does not mean the end of the patient’s life. Although there is no cure for the disease, we can provide quality of life with plenty of love and patience.

In successful cases, we have identified several strategies adopted by family members that are worthy of sharing:

1. Accept the diagnosis: share the diagnosis with family members and friends in a timely and appropriate manner.
   
2. Assemble a care team: identify at least one family member, neurologist, primary care physician, physiatrist, dietitian, caregiver, and a spiritual advisor.
   
3. Consider care alternatives and opt for the most viable ones (to start with): the alternatives may include having a family member or an external caregiver provide care at home or transferring the patient to a nursing home.
   
4. Distribute tasks among family members: medical appointments and health, medications, legal and financial matters, and home maintenance and security are responsibilities that can be shared among family members.
   
5. Locate community support resources: recognize family strengths and weaknesses and seek and accept help throughout this process.

Although the question is what to do after getting a diagnosis, it is best not to stand by just because it is an incurable, progressive, and irreversible disease. With the combined efforts of the healthcare community, community institutions, and family members, we can provide patients with many plentiful years of life.

It is important to recognize that an Alzheimer’s patient is the most difficult to care for, which has an overwhelming impact on their caregiver. Therefore, family caregivers must also take care of their own health. Even if the designated caregiver is an external one, the patient’s relatives must still watch over their health as well. To provide care, we must take care of ourselves!

We cannot ignore other health conditions that a patient may have at the time of diagnosis, which may include diabetes, heart conditions, intestinal conditions, dental problems, visual impairments, allergies, etc. These situations must be identified and given the necessary attention and follow-up. The focus, then, must be on overall health and not only on the patient’s Alzheimer’s disease.

On the other hand, it is also necessary to learn to speak Alzheimer’s and this requires educating ourselves on the subject. There are many community and online training resources available for this very purpose. In addition, numerous books and films have been written about Alzheimer’s and patient care. Examples of these films are Iris, The Notebook, Still Alice, and The Father, which were all produced in recent years.

Without a doubt, a diagnosis is the trigger that captures the attention of family members and promotes patient and caregiver wellness!