Michelle C. Feng, Ph.D., Chief Clinical Office
November is Alzheimer’s Awareness Month – and for many just getting the diagnosis triggers emotions which can cloud the path towards managing the disease. So, what can be done – and especially in the first week after a diagnosis?
As a team focused on the mental healthcare needs of the elderly, we are sensitive to how fast one’s life changes when faced with Alzheimer’s. While Alzheimer’s is a progressive disease, there are many things that happen soon after a diagnosis, for the patient, the caregivers, and the extended family alike. For many, the most difficult step is knowing what to do first. There are so many great resources out there, but it can be hard to know what to do first.
So, what are three things all affected parties can do in the first week after a diagnosis?
For Patients:
- 1) Take it one step at a time. It can be easy to catastrophize and think about the worst scenario. This is normal to imagine, but not helpful to dwell on. Instead, focus on one small thing you can do each day this week to ground yourself. Take a walk, engage in your normal routine, and spend time with others.
- 2) Be kind to yourself. It can be frustrating when you have trouble doing things that you used to be able to do easily. Getting down on yourself only fuels the fire and can lead to isolation or lashing out at others. Instead, focus on what you can do – some kind of safe, physical exercise, can help put you in a better mindset.
- 3) Remember, you are still you. You are no different today than you were the week before you were diagnosed. A diagnosis simply puts a label to some of the things you have noticed and can help point you in a direction to get the support and resources that are out there and available.
For Caregivers:
- 1) Get support for yourself. Caregiving is a marathon, not a sprint. You wouldn’t start running without first having the right clothing, tying your shoes, and preparing your nutrients. The same thing applies for caregiving – you must take care of yourself and find resources for you and not just your loved one.
- 2) Do something you really enjoy. Carve out time this week to do something that you enjoy. Just the process of thinking about what you enjoy can be beneficial. Schedule it in the calendar so you don’t push it off. These appointments are important for maintaining perspective and practicing self-care.
- 3) Get informed, but don’t go overboard. There are a lot of great resources out there. Take some time to review reputable websites and focus on the “newly diagnosed sections. If you find yourself feeling more informed and empowered, good. If you find yourself getting more anxious and overwhelmed, take a break and do something different for a while.
For families:
- 1) A diagnosis affects the whole family, start thinking of a treatment plan that includes the family. One person may have been diagnosed, but it affects all those around them. While you won’t be able to come up with a full treatment plan in the first week, start thinking about what the family’s resources are and what can be done as a family (and by family I mean the network around the person diagnosed).
- 2) Understand that family members will react differently. Before you focus on the reaction of the person diagnosed, first check in with yourself and see how you are reacting. One may go into action mode and start booking appointments while another dives into their own work. It’s normal to feel sad or scared, it’s also normal to feel numb or even relief. Many people feel a combination of these things. Try not to put too much judgement in how you or others are reacting at first, it has no correlation to how much you care about your loved one. What you can or what to do in the situation may be different from someone else in the family, and this can also change over time.
- 3) Enjoy a meal together. Find some time in the week to get together and share a meal. If you are remote, find a way to join in via videoconferencing. There will be plenty of time to find the right doctors, care coordinators, home health aides. For this first week, spend time connecting with each other and remembering what is important in your relationships.
Alongside these important activities, all parties can also consult a number of great resources for further information in the first week after a diagnosis:
- • Alzheimer’s Association has a wealth of resources all on one website. There’s information for those just recently diagnosed, caregivers, and home health support services. Take a look at what their local chapter has to offer.
- • Local Alzheimer’s or Dementia-focused groups within your area. For example, Alzheimer’s Los Angeles is a local organization that cares deeply about supporting the diverse community and provide practical information that is easy to digest. They have easily accessible resources, such as care counselors you can call to help develop a care plan
- • Academic institutions that specialize in Alzheimer’s Disease Research. For example, the University of Southern California has an extensive Alzheimer’s Disease Research Center with ongoing clinical trials and research studies. There are also recent articles and research papers that you can easily access to learn more about the science.