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Sukham Blog – A monthly column focused on South Asian health and wellbeing.
Last month, we talked about what we should do if we were concerned about Amma’s recurring memory lapses. In this article, we explore options and describe the steps to be followed if Amma receives the diagnosis we were dreading – tests that confirm she is in the early stages of dementia. Her symptoms are consistent with an underlying progressive and irreversible illness that is causing damage to the complex system that controls cognitive function: the neurons or nerve cells in her brain, and the networks they form with other neurons. These symptoms could be caused by any one of a half-dozen diseases; Alzheimer’s is the most common one to affect older people. Parkinson’s disease also often leads to symptoms of dementia.
It is never easy to receive such a diagnosis. The news is earth-shattering, not only for the patient but also for the entire family circle. A vibrant individual will slowly but surely lose his or her identity, mind, and sense of self, and slowly forget all lived events; forget everything and everybody – as though that life never happened. Like a frame from which a precious photograph slowly fades until it is gone. The patient lives unaware in this wicked prison, while those around her agonize helplessly. These cruel diseases strike not just the patient, but the entire family. Perhaps we’ll find a cure one day. Perhaps we’ll find more ways to delay disease progression and reduce the symptoms, enabling a longer, meaningful life. Science and medicine have made progress in the past couple of decades, and there is hope of more to come in the future. In the meantime, what is the best we can do to cope?
Amma’s diagnosis calls for a mobilization of the immediate family to participate in a strategy session with her. You should look at Amma’s circle to decide if any of her close and intimate friends should be included. The objective of this effort should be to develop short and long-term plans that address several different issues, including: dealing with the emotional impact of the diagnosis on Amma and the rest of her circle, understanding the diagnosis and treatments available, making financial, legal, and personal plans, addressing safety and living arrangements, understanding all available support, and developing a comprehensive care plan that puts Amma at the center, and considers the impact on her family and very close friends.
Some excellent tips provided by the National Institute of Health and the Alzheimer’s Association serve as a guide and starting point for this strategy session. While the main focus is the newly diagnosed patient, much of this applies to his or her circle as well. I’ll describe in brief what’s available to Amma in these two resources. It is very important for all involved to be open and honest with Amma, and with each other about what lies ahead; to share and understand one another’s perspective.
When one hears of the diagnosis, the gamut of emotions covers a range that includes denial, anger, resentment, depression, fear, loss, grief, and a sense of isolation. These emotions will be with you for a while, and you’ll need to find healthy ways to deal with them. The Alzheimer’s Association provides many excellent suggestions. Know that you are not alone; that there is a large community out there living and coping with dementia and its impact, and you can draw on them for learning and support. Talk to the doctors to learn more about the disease and its likely progression and the available treatments. Find out if any clinical trials might benefit you. While a cure is still not in our grasp, the medical profession is learning more and more about the disease and how to handle it.
You will have to learn to live with this disease, and an important step is to share the diagnosis with those who matter in your life. Continued interaction with them is an essential part of your life, and knowing about your diagnosis and normalizing it is the healthiest way to maintain and grow your relationships with them. Be prepared for varying and unexpected reactions from others. Take your time doing this; the sharing will raise new emotions. Remember that there is no more stigma associated with dementia than with a diagnosis of heart disease or cancer. Know that this is not your fault! As the disease progresses, your abilities will change. Accordingly, you will need to prepare yourself for role changes, for gradually becoming more dependent on others. This reality can be very difficult for many; however, it is the new reality. Openness, honesty, and trust on all sides are essential.
Develop a detailed plan for your future that covers legal, financial, living, and end-of-life decisions. Make sure that those legal and financial affairs are in order, and prepare an updated Advance Health Care Directive as soon as possible. Get a good understanding of the resources that may be available to you. Take a deep look at your living arrangements. You live alone right now. Do you need to plan for a different arrangement, either now or sometime later?
Safety and the ability to take care of yourself should be prime considerations. Prepare to give up your independence, and accept that it is okay to get help from others. Make plans for a transition to living arrangements that best suit you and your family, one that will provide the support and care that you need. Proactively build your own care team that could include family, friends, neighbors, and medical professionals. Avoid isolation and stay socially connected. Learn about all the support services in the area where you live. Get educated on all the treatments and clinical trials that may be available for your particular condition. Understand what drugs are available to delay cognitive decline, and ease any symptoms that you have. Find out if any alternative treatments or medications are available.
Another source of support to consider is Palliative Care. This medical subspecialty is available in most large hospitals and medical clinics. A multi-disciplinary palliative-care team works alongside the medical care team to help the patient and family address their psychosocial, spiritual, and medical needs. They can help improve the overall quality of life, manage symptoms like agitation, poor or altered sleep, pain, and distress, advise families on what to expect over time, and provide guidance for decision making.
Amma, you have a life-changing diagnosis, but with a detailed action plan ready, with a good support system and a self-care plan in place, you can live well and look forward to a healthy life in which you focus your energy on what matters most to you!
Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at sukhaminfo@gmail.com
With sincere thanks to the Alzheimer’s Association and Tolga Ulkan at Unsplash for the use of their images.